Hope, Love, Joy and Excitement!

I think it's safe to say that I finally have a child who can speak in sentences!!! I have just been unbelievably impressed at Nick's vocabulary and his ability to put 3-4 words together to make a sentence. He demonstrated this today when we decided to do some shopping at Gymboree. Daddy happened to find an adorable dinosaur costume in a size 5T that was on clearance for $13. I tried to put it back on the rack and Nick started crying "I want dinosaur!" Yup...he got to have the costume. However, I didn't expect him to INSIST on wearing it out of the store and all over the shopping center. It was a rather warm day, but every time I asked if he was ready to take off the costume, I got a stern "NO!!" Soo...Nick walked around in the very warm weather all night in his dino costumes. We got stared at and pointed and giggled at all night, but Nick enjoyed the attention and Allen and I agreed that you are damn well allowed to wear a dino costume any time of the year when you are 4 years old!! We managed to get it off of him for the car ride home, but the fight was on when we got home and got dressed for bed. Nick just flat out insisted on wearing that costume to bed, so we finally gave in and let him put it on. I tucked my little dinosaur into bed and snuck back into his room after he fell asleep to remove the costume so he wouldn't get too hot!

Nick amazed us yesterday when we went to pick up a few things at Target. Because he is normally pretty wild in stores, I made him sit in the shopping cart. This did not make him happy, but he dealt with it....for awhile anyway. Finally the cries of "I want down!" forced us to give him a chance and see if he could walk like a good boy. As soon as his feet hit the floor, he went tearing down the aisles across the store. Allen gave me an exasperated look and just kinda shrugged. I told him to go get Nick and put him back in the cart since he wasn't able to follow directions. Right as Allen started to run after him, Nick stopped. He had reached the candy counter which holds his absolute favorite treat....gummy dinosaurs. He picked up a dino, ran across the store where we waited, put his hand on the cart and said...."I be good!" And he was....at least as good as Nick can be, for the rest of the shopping trip. As a reward, Nick got to eat his dinosaur after we checked out.

This post has been written over the course of several weeks. Nick has continued to surprise and astound me almost every single day. He now has an infatuation with band-aids. Every night he tells me, "I want band-aid" and holds up his "hurt" finger. After I carefully applied to band aid tonight, Nick held up his bandaged finger and said, "I LIKE band-aid!" I felt my heart leap with joy at his ability to express even a very small and unimportant thought. I told him, "I LIKE your talking!!" At lunch today, he told me "I want macaroni-cheese." You'd better believe he got that $4 GFCF Amy's mac and no cheese just as soon as I could cook it. I giggled and got (just a little) upset when he fed his stuffed dinosaur the first bite. Luckily the dino was full after just one bite, but he sat at the table with Nick for the rest of the meal and his mouth was easily cleaned out.

Early in the evening, I was a little touchy with Nick. We were trying to get out of the house to go to the grocery store and he was stalling. He insisted on taking every one of his stuffed animals and tucking them into our bed for a nap. By the time we left the house, we had no less than 10 stuffed animals tucked under the covers as Nick told each one, "night, night" and "sleep." He insisted on bringing at least one stuffed animal with us..."I want green bunny!" I got even more irritated when he insisted on climbing into the backseat of the minivan and seat belting that darn bunny in. When he couldn't get the belt latched, he said, "I want help please!" As I leaned down and crammed myself into the backseat and buckled the stupid bunny in, I was grumbling to myself about the stupidity of this all and wondering if we would ever actually get out of the house. I finally got the bunny and Nick buckled in and climbed out of the van....sweating and irritated. Allen looked at me and said, "It's so great to see him pretending.....he's so much better than he used to be....." Again my heart leapt as I was reminded how much I had hoped and prayed and cried for Nick to do these "stupid" little things mere months ago. I have a son who speaks in sentences, insists on band-aids for an imagined boo-boo, pretends to feed stuffed animals and buckles them into their seats just like him. I am inching closer and closer to having a "normal" child. I'll love him no matter what....even if this is as far as he's come 20 years from now. In my heart though, I know there is hope, love, joy and most of all excitement for his future.

The lucky one

So, I have not updated for a LONG time, but I have been busy training at work! I'm going to try and be better about it now. Nick has been just amazing us every single day lately. The other day, I was talking to Allen on the phone and heard Nick in the background say, "I want paper.......please dada!" I was SHOCKED! Who would've thought that Nick would speak a 5 word, unprompted sentence?!?! Also, when we got into the minivan the other day, he said "Grandma." I thought he was just talking about his video he was watching and said, "Yeah, yeah, Grandma." So, if you can imagine Nick's little voice in a tone like "OMG my mother is an idiot," he says, "I WANT GRANDMA!" I was speechless. We were actually planning to go to Monkey Bizness to let him run off a little extra energy and Grandma was at a cooking class. So I said, "Nick, would you rather go to Monkey Bizness or go see Grandma?" "MONKEY" LOL Sorry Grandma, but you can't compete!

The day of the Monkey Bizness trip was actually quite the experience. We had to get out of the house because I was afraid I might throttle Nick if we stayed home. I had gone upstairs for just a few minutes to do laundry and Allen was in the bedroom talking to me. I came back downstairs to Nick, with a huge grin on his face....he says "I color." Yup....he colored me a huge, beautiful, purple sun....in permanent maker.....on my living room carpet. He was so darn proud of his picture that I couldn't punish him, but I also knew that we needed to get out of the house right away. As soon as we got to Monkey Bizness, we discovered that he had peed completely through his pull up and his shorts. Of course, we had nothing to change him into. So, we changed his pull up and went to Carter's in the mall where he promptly got a new pair of shorts....sigh. After a good hour and a half at Monkey Bizness, we decided to go next door and check out Toys R' Us. Nick has been talking obsessively about roller skating, so we thought we'd check out the skates. We have no idea where he got the idea to roller skate or if he even really knew what it was. Sure enough, as soon as I said, "Nick, do you want to come look at skates?" He abandoned the train table, grabbed my hand and dragged me in the direction of the skates. We put a pair on him and he held daddy's hand while happily skating (and falling) all over the store. He had a huge grin on his face and he kept saying, "roller skate and I skate." He was so excited that we had to buy him a pair. It was too late to use them that night, but you better believe that he broke them out immediately after getting home from school the very next day!!

Speaking of school, we were waiting for the bus this morning and it was pouring rain outside. I said, "Nick, what's the weather like?" He looks outside and back to me and says, "It raining!" I was so proud of him! Then he tells me, "It cloudy." WOW!! He has just been having a little word explosion lately. I can't believe all the things he's being saying! I know he has a long way to go and I know he is not where a typical 4 year old would be, but he's exactly where he can be. He is working so hard and accomplishing so much. I truly never imagined that he could come this far in just one year! Dreamed maybe, hoped maybe and prayed maybe, but never never really believed. I have so much hope for Nick and his future. He makes me tear up almost every day lately :) Just the other day, he was walking by me and he stopped, looked me directly in the eyes, waved and said "Hi Mommy!" I know that there are many mothers who will never hear the word Mommy from their child's lips or who will only ever hear it if they prompt a child to say it. Yes.....I am a lucky one.

Small things that are a very BIG deal!!

I am SO grateful right now for the many ways society has begun to embrace children and families affected by Autism. There are many things I thought Nick may never be able to experience. For instance, I remember my own parents telling me about the first time they ever took me to a movie. It was a special and wonderful experience for them to see their child's eyes light up at this new adventure. At that time, I just knew that it would be a very long time (if ever) before I could ever experience the simple pleasure of taking my own child to the movies. It wasn't long before I heard that AMC theaters was trying out "Sensory friendly showings" in their theater nearby. I did some research, talked to some other parents and learned more. Apparently, there was some "big-wig" at AMC who had a grandchild with Autism. They decided to hold a sensory friendly showing of current family type movies once a month and see how it went. One Saturday a month, at 10:00 a.m. there is a showing of a brand new movie for families affected by Autism. The sound is turned down a little quieter and the lights are brought up a little lighter and families are allowed to bring in special snacks for kids on special diets!! The best news of all? The whole "silence is golden" rule does not apply during these showings! We have been to a couple showings since I first heard about them and just this past weekend, we saw "How to train a Dragon" at the sensory showing. I brought GFCF popcorn, juice and candy and Nick, Max, Grandma and I met at the movie theater. The lights went down and the movie started immediately....NO previews to sit through!! Nick immediately covered his ears, but soon realized that he could watch the movie without the sound hurting his ears. I watched both Nick and Max become entranced by the movie and I felt my heart grow warm with gratitude that they were able to have this experience. When Nick randomly let out several loud yells no one in the theater turned to stare or shushed him or even acted as if they noticed. Many other kiddos yelled or made funny noises during the showing as well. One kid ran up to the front of the theater and made shadow puppets against the screen. When Nick got bored, he climbed out of the aisle and walked up and down the stairs or moved to another row. At one point, Max tried to walk down the aisle and climb into a little girls lap. I grabbed him and apologized and that little girl, who couldn't have been more than 10 years old, said, "It's o.k., my brother has Autism too." It almost moved me to tears just to see and hear how accepting everyone was of each other. It was truly a wonderful experience and I certainly hope that other companies will take a cue from AMC. They have definitely made loyal customers out of our family!!

We have also recently had a very nice experience at the T-Rex restaurant in Kansas City. For anyone who doesn't know, this is a dinosaur themed restaurant that has enormous robotic dinosaurs that actually move and growl. I have wanted to take Nick to this place for quite awhile, but wasn't sure how he would react. Allen and I finally decided to brave it and take both boys there for dinner. I didn't have any idea whether they had any GFCF menu items, but I hoped we would figure something out. When we got to the restaurant, I inquired about a kid's meal for a special diet. The head chef came out to talk to us and gave us several options. There were some items that were GFCF on the kids menu or he would be willing to make any GFCF meal from the adult menu into a kid-sized portion! The best news of all was that he could make GFCF french fries! Thank god for small miracles, because Nick had been begging for french fries with every Burger King we passed on the 30 minute drive to the restaurant! We were seated immediately and Nick popped right back up and explored the restaurant. He circled the entire restaurant about 3-4 times and pointed out all the dinosaurs and fish. He was a little nervous about the growling (it was pretty loud), but he handled it well. He did manage to escape from daddy at one point. He was located on top of the Woolly Mammoth display approximately 20 feet above the dining room floor. Sigh...

After we finished dinner, we took the boys into the little shop they have attached to the restaurant. They have a "Build a Dino" made by the same people that do "Build A Bear." Nick and Max each got to pick out a dinosaur to stuff, bathe and print out a birth certificate for. Then we let Nick pick out a dinosaur t-shirt and looked around the store some more. Nick found some dinosaur figurines that he fell in love with and threw about 10 of them into the stroller. He shopped just as fast as I removed those darn things from the stroller. Then, as I leaned over to say something to him, my purse gaped open and he threw two figurines into my purse! Whew....glad I saw that, because it would've been hard to explain at work. So, about $65 later, we finally exited the store and did some shopping at the surrounding mall. We had a few minor snafus....one in which Daddy turned his back on Nick and then turned back around to find him running through a water fountain with no shoes or socks on. He told me about it after I came out of the store I was in and after I stopped laughing, all I could say was, "I can't believe he knew to take off his shoes and socks first!!!" Ahhh......I will say that Autism teaches me to enjoy and celebrate all the minor and yet enormous progress that Nick makes in everyday life.

Tough Questions...

It has been awhile since I updated and that’s probably because I have been meaning to (and avoiding) writing this entry. I’m not really sure how to write this, so I guess I should just dive right in. Allen and I have always wanted at least two children. Once we began suspecting Autism with Nick, we took a step back and reconsidered our options. We were worried that a second child would take time away from Nick and stall his progress in therapy. Mostly we were terrified that another boy might mean another child with Autism. We knew the odds of another boy were very high for us because there have been no women born on Allen’s fathers side of the family in over 90 years! We weighed the risks and decided that we wanted another child no matter what. If we had another child with Autism, we would be in love just the same. Also, research shows that siblings are generally a good thing for kids with Autism. So, by the time Nick was officially diagnosed at just over two years old, I was several months pregnant with Max.

Now, the whole time I was pregnant, people asked if I had concerns that I might have another child with Autism…..YES! People asked even more so after we found out we were having another boy. Once Max was born, I started getting the question more often. “Do you notice any signs? Do you have any concerns?” I tried really hard not to scrutinize everything Max did and not to compare him to other kids his age. Once he got a little older, we noticed that he had great eye contact and he smiled or giggled appropriately. (Both things that Nick didn’t do as a baby) We thought we were safe and breathed collective sighs of relief.

Although I assured everyone who asked that Max probably did not have Autism, the truth is…..I was worried. Yes, he made eye contact, smiled, met his milestones and played appropriately with toys. BUT….he rarely ever babbled and at 17 months old, he had maybe one spoken word. I tried sign language with him and finally got him to sign “more.” He refused to do any other signs or repeat any words I asked him to say. I tried to stay calm and give him some more time. One day, Allen asked me, “Isn’t this around the age we first had Nick evaluated.” I sadly told him that Nick was EXACTLY 17 months old when we called ITS to come evaluate him. We made a joint decision to again call Infant and Toddler Services for an evaluation. Several weeks later, a team showed up to determine if Max met criteria for any type of therapy. It was determined that he was at least 25% delayed with his speech, but that he would probably only need a few sessions of speech therapy to get him caught up. The general consensus was that we should not worry about Autism (Yeah….where have I heard that before?) and that Max probably didn’t talk on schedule due to his older brother’s speech delays.

We started our allotted four sessions of Speech Therapy with one of Nick’s former therapists. Now, approximately 4-5 months later, we are still receiving therapy through ITS. Max is refusing to use his sign language AT ALL. He does say a few words, “mama, dada and NO” but not much else. When you ask him to repeat a word, Max generally says the same thing every time, “Da.” It’s too early to say whether he is just a late talker, has some type of speech impediment or even has Autism. Recently, Max started doing a fair amount of “tip toe walking” which made my heart sink. Walking on tip toes is a very, very common sensory issue in kids with Autism. We discussed it with his Speech Therapist and they are having an Occupational Therapist come out for an evaluation, “Just to put our minds at ease.” Allen and I have toyed with the idea of making an appointment with the developmental pediatrician, but we are holding off on that for now.

I know that Max is extremely stubborn and I have the distinct feeling that he is pulling a huge trick on his Mommy and Daddy, but I’m still scared. I’m grateful that he has started babbling long strings of nonsense, but shocked at the very few number of words he actually says. It doesn’t help that I know a ton of people with boys his age and I can’t help but compare them. Max is well behind other kids his age as far as his speech goes. I can only hope and pray that he is just a late talker, but the truth is that life would be very difficult with two special needs kiddos. I just continue to think positive, take deep breaths and remind myself that I love Max no matter what and that I will do everything in my power to be his biggest advocate if and when he ever needs me.

Confessions and Milestones

So, I have been trying to have a new attitude when people stare or make comments about Nick while out in public. He has still been engaging in his random yelling while out in public, which tends to cause some pointed looks in our direction. One day we went to Burger King to have lunch with my BFF and her son, Blake. Nick had a great time and played endlessly in the play area. He was not too happy when it was time to leave and he let me know it! As we were walking through the (very crowded) dining area he let out a super loud scream. A large table full of people flinched because it frightened them and they immediately turned to get a good look at us. I smiled politely, shrugged my shoulders and said, “I guess sometimes you just have to let it out!” The group chuckled and turned right back around! So, I have now decided that humor is generally a good way to deal with staring. Just last week, we had another incident at Toys ‘R Us while out with my BFF and Blake again! We tried to make a quick pass through the store to look for one toy (first mistake). Nick REALLY wanted to play with the table of wooden trains that was set us in the store. I told him that he needed to use his words to tell me what he wanted, but he was being stubborn and refused. So….we continued walking through the store. He screamed louder than I thought possible, threw himself on the floor kicking and screaming and generally throwing a fit. I ended up half carrying and half dragging him out of the store, screaming and kicking the entire way. As we neared the exit, I saw a man standing with his son (who looked about Nick’s age) staring at us with eyes as wide as saucers. I know he was thinking, “what a spoiled kid! Or I’m glad my kid is well behaved” or something similar. I glanced at him and smiled through the screaming and just said, “We’re having a little bit of a bad day.” He giggled and said, “It appears so!” Anyway, humor is my new tool and will continue to be so, until someone gets snarky with me…then WATCH OUT because Super Bitch mommy will appear! LOL

Nick has had a couple of mini-milestones lately. First, he stayed dry all day at school on Thursday!! He has been doing a good job of staying dry most of the school days this week. He has had some poop accidents, but that’s pretty normal from what I understand. He even did a good job at home and had very few outbursts when his timer went off for him to go potty! Second, Nick and I had what I consider to be our first ever phone conversation on Wednesday night. I called home after Max and I had to take a trip to Children’s Mercy (long story) and Nick got on the phone. He said, “Hi” and I said “Hi” then he said “I had baff.” I said, “What?” again, “I had baff” me again, “What?” Finally I heard daddy saying in the background, “bath!” So, I said, “oh, you had a bath?” Again, “I had bath.” I said, “All by yourself, without your brother?” Nick says, “Myself.” I said, “Did you get bubbles?” Nick ignored that, so I said, “I love you Nick.” “Love you Mama.” As I hung up the phone, I realized that Nick and I just had a real conversation with actual give and take! Granted, he mostly just repeated exactly what I said to him, but it’s a start! He understands the general concept, which is amazing!!

Now, I have a confession to make. Last night, I let Nick cheat on his Gluten Free, Casein Free diet. We ordered pizza last night and started eating it in front of Nick. Now, normally I would make Nick his own GFCF pizza, so he didn’t feel left out. Lately, however, he has refused to eat his pizza at all and doesn’t seem the least bit interested when we eat something he can’t have. Now, last night, Nick immediately started pointing at our pizza. Allen said, “what Nick?” Nick says (in a super quiet quivering little voice), “I want pizza.” Allen looked at me like, “what should I do?” I felt so darn bad for the kid, that I just told Allen to let him have a piece. I cut up an entire piece of pizza and Nick scarfed it right down! This is absolutely not going to become a habit….I have not knowingly allowed Nick to cheat on the diet since we started him on it last June! I feel pretty guilty, but not half as guilty as I would feel if he’d had to watch us eat something he wanted so badly. Lesson learned…..make special pizza for Nick or risk the trembling lip :)

Mr. Turtle and The Bunny

I have spent all day at work thinking about my little boys today. Not that I don’t always think about them, but I miss them especially lately because I have been spending a lot of time at work. This week I am working a 56 hour work week, which includes four straight 12 hour days and working on a day off. As a result, I am basically getting up in the morning, getting the boys ready, dropping them off at Grandma’s and going to work. By the time I get home at night, they are sleeping soundly. So, yes……I am feeling a little sorry for myself. Today, when I dropped Nick off at Grandma and Grandpa’s he was blowing me kisses as I walked out the door. He blew kisses with both hands over and over and it became a little game. I blew a kiss, then he blew more and so on…..it got hard for me to leave. Max was also waving and saying “bye bye.” So…I just keep thinking about Nick blowing me those kisses and chuckling to myself.

Nick has been being a pretty silly boy this week. The other night, we went to Wal-Mart to pick up some paint samples. He was lying on the ground on his belly and writhing around. I thought he was either upset about something or tired and I kept telling him to get up off the floor. Finally he looked up at me and said, “I turtle” and continued on with his “slithering.” I was so proud of his pretending that I let him keep being a turtle while I took some pictures. Unfortunately, turtles move rather slowly, so eventually I had to tell him to walk like a little boy. He protested….”I turtle!!” and continued his slow crawl/slither. I was getting really irritated with the pace at this point so I finally told him, “You will have to either get up and walk like a little boy or be a turtle in the shopping cart!” Well, he sure popped right up started walking like a big boy……lol. It’s funny how well the proper motivation works! Isent his teacher a text with a picture of Mr. Turtle and said that he was pretending and how proud I was. She texted back that they were “being turtles” during a tornado drill at school that day. So….while he didn’t come up with the idea or the motions on his own, he was still pretending! I got a pretty good chuckle out of the thought of all the little turtles in his classroom that day too!

Nick has become a tad obsessed with his new stuffed bunny lately. I got a frantic phone call from Daddy the other night because Nick was laying in bed crying for the bunny. Luckily, I remembered that he had insisted on bringing it on a car ride with us earlier in the day. Bunny was found safe and sound in the car and Nick was able to get to sleep. However, he did manage to leave it at Grandpa and Grandma’s house the other night and Daddy had a minor crisis on his hands. He was able to locate a “substitute” bunny which Nick deemed sufficient. I never dreamed that this silly, stuffed bunny rabbit would be such a good investment!! I might have to buy some extras during the after Easter sale, just in case! Speaking of Easter and bunnies…..I found a place online that makes GFCF chocolate Easter candy!! I was SO excited! I ordered Nick a chocolate bunny, some m&m type candy and some chocolate Easter eggs for his basket. Before this, I have only been able to find carob chocolate chips and rice milk chocolate bars as a substitute. Nick gobbles them down and they are so expensive that we don’t buy them much. As it is, my online order ended up costing $40 for the chocolate, but I also got some extra for future treats!!

Monsters and Bunnies and Pretending.....Oh My!!

As far as milestones go, this has been quite the week for Nick! Last weekend, we met up with my BFF and her son, Blake to do some shopping at Target. Blake will be 3 years old soon and he seems to really enjoy spending time with Nick and Max. I’m not sure why exactly, because neither one of them has ever paid much attention to him! Anyway, the first thing we realized was that Target was having Dr. Seuss reading day. This amounted to some teenage employee wearing a Cat in the Hat striped hat and sitting in the cafeteria area while reading Dr. Seuss books to kids. None of our boys cared about “story time” but they sure were excited to see balloons and treat bags! I asked Nick what color balloon he would like, not because I really expected an answer, but just because. Nick immediately answers, “Green!” Wow….so…..I was impressed the fact that #1. Nick knew he should respond to my question and #2. He knew to respond with a color! As you can imagine, Nick got his green balloon! As a nice surprise, he was able to enjoy some GFCF treats from the snack bag that was passed out as well. Now, to the real excitement of the day (at least for me). Blake and Nick were sitting side by side in the shopping cart while we were shopping. I could hear them jabbering a fair amount about nothing except when Nick would randomly let out a VERY LOUD shout and Blake would tell him “no yell” or “stop yelling.” Nick paid no attention whatsoever and continued to yell randomly throughout our shopping trip. At one point, Nick and Blake seemed to be interacting and playing some sort of game, so I started to pay close attention. Nick pointed to the general area behind me and yelled “MONSTER!!” Blake started screaming and although I was shocked beyond belief, I played along and yelled, “Monsters!! Where???” Nick and Blake were laughing hysterically at their trick on Mommy. I kept asking Ellee (my BFF)……”did you hear that?” I just couldn’t believe that Nick was interacting with Blake and pretending!!! It brought tears to my eyes!


We had quite another milestone while shopping at Target later in the week. (Can you tell we spend a lot of time in that store?) While we were shopping, Nick began getting antsy, so Daddy pulled a stuffed bunny rabbit off a shelf and handed it to Nick to keep him occupied. We have been doing this ever since Nick was a baby and he has never minded when we put the toy back onto the shelf towards the end of our shopping trip. I guess you could call it a “perk” of Autism that he never cared either way if we bought a toy or put it back on the shelf. I specifically remember people in stores commenting that we had such a well behaved little boy because he didn’t throw a fit when we put a toy back. I used to think sadly to myself that if they really knew Nick, they would understand that he just didn’t know to care. Now…back to the Target trip at hand. Nick played happily with his bunny rabbit throughout our shopping trip. As we neared the checkout line, Daddy took the bunny and stuck it on the shelf. Nick immediately became upset and started crying and screaming. He was upset enough that he didn’t realize he had the words to tell us what he wanted. I met Daddy’s eyes as if to say, “see what you started?” Daddy looked shocked and said, “well, he’s never cared before!” So…..as we are in the checkout line and Nick is throwing his fit, I said, “Nick, what do you want.” Nick got real quiet and looked me in the eye with his lips trembling. “I want bunny.” Yup….Nick got the stuffed bunny. I’ll give him credit…he has been carrying that thing around ever since and has demanded to add it to his growing list of stuffed animals in bed with him at night. Today I asked him what we should name the bunny. He responded, “ROOARRRR!!!!” I guess we’ll have to work on coming up with a name, but I am just unbelievably impressed with Nick’s progress lately!!!