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!!!

Thank God for Autism

When Nick was first diagnosed with Autism, I remember my mom (and a lot of other people) who were sympathetic. I mostly remember my mom saying, "I'm sorry sister" after she heard the diagnosis, because I think that's the only time she has let me feel sorry for myself. It wasn't long after the initial diagnosis that she told me, "It could be worse." Although I knew it was true, I used to get really upset when she said things like that. I mean....obviously I knew that it could technically be worse, but seriously? It really didn't help me feel any better about the diagnosis that "it could be worse." I really did try to live by these words, because I knew that she knew what I was going through. See...my mom has managed to raise two special needs children herself. I know that sometimes, the only thing that probably kept her going was the idea that yes, "It could be worse." I even remember telling Angie (our favorite ITS therapist) that "It could be
worse" when she expressed sympathy over Nick's diagnosis. I remember the moment very clearly. I told Angie that Nick had received his diagnosis and she said, "I'm sorry to hear that." I shrugged my shoulders and said, "Well, it could be worse." Angie said something to me at the time that I will never, ever forget. She told me (in not so many words) that yes....it could definitely be worse. However, she told me that I should still let myself mourn what I have lost. It is true that Nick will never be the child or possibly the man that I had expected. I do still let myself mourn that loss....but mostly I just celebrate everything that makes Nick, well....Nick. I can't imagine Nick without Autism....it's just a small part of who he is.

Now, for a long time, I was angry with my mother for always reminding me that "It could be worse." I felt pretty sorry for myself for quite awhile. Sometimes I wished she would just shut up about it and mope along with me. What can I say? She's never been that kind of a woman. Over the years, I have learned to appreciate everything that Nick does have and everything that he CAN do. I have met other children with Autism who will never speak, who do not sleep through the night, who will never, ever be able to function without continuous care. I remember the first time I heard Nick say "mommy." It took him 2 1/2 years to say it and I felt truly sorry for myself that I had to wait SO long to hear it. Then I met a child with Autism who had never and probably never would say "mommy." I felt so guilty and ashamed and for once, I finally realized how much worse it could be.

Over the years I have seen many examples of how lucky we are. After all, Nick is very smart, he can walk and run and jump, he says lots of words, I know he is happy and most likely; he will live a long and healthy life. What about parents who will never hear their child say "mommy" or "I love you?" What about parents who will never see their child walk or run? What about parents who don't know whether their child is happy or what their favorite food is? Most recently, my best friend's nephew was diagnosed with cancer. He was about 3-4 weeks old when he was initially diagnosed and he has been doing chemo ever since. He is now 4 months old and they have just learned that his tumor has grown. So, now I say, what about parents who don't know whether their child will live? I have been thinking about that little boy pretty often lately. I am so grateful for my healthy child. It is for these reasons that today I understand that "It could be worse" and I
thank God for Autism.

The WILD thing

Let me just start this out with a little summarizing. My child has been WILD for several days now. I know moms of little boys and mom of kiddos with Autism will understand, but wow. For the past four days, Nick has been being absolutely as destructive as possible. I feel like the only words coming out of my mouth lately are, "Nick, no, Nick stop, Nick, you're gonna hurt yourself, Nick, stop tormenting your brother, Nick, it's not o.k. to put the dog in a headlock" etc etc etc. Anyway, you get the picture, right? I knew it was especially bad when I told him to stop doing wrestling moves on the poor dog. Yes....I'm serious. So, what does he do as soon as he stops messing with the dog? I know, it's hard to believe, but he climbs on top of his dresser and counts, "ONE, TWO, THREE.....JUMP!!!!" Nick proceeds to take a flying leap off the top of the dresser onto his bed. What can I say? I give up the fight and get some chuckles out of watching him do this several more times.

Nick has also re-discovered his love of tearing up paper. The other day, I left him at the kitchen table with a bowl of strawberries and a cup of rice milk. He was watching a cartoon and Max came with me while I went to the bedroom to take a shower. I must know Nick a little better than I give myself credit for, because I went to check on him right after getting out of the shower. He had managed to spill the whole cup of milk on the kitchen table. I caught him alternately dipping the strawberries in the milk and attempting to clean the milk up....with our bills. I had to throw away several bills that were literally falling apart because they were so wet, but thankfully managed to save our new insurance card so I could take it to register the new minivan. I cleaned up the milk and retired to the bedroom to dry my hair and get dressed. Again, I checked on Nick as soon as I was all dressed and dry. Imagine my surprise when Nick ran up to me as soon as I came near the kitchen!! This is a common technique by Nick to distract me from whatever mess he has managed to make. So, I immediately get past him and find that he has found the insurance card for the minivan and ripped it to shreds! So much for managing to salvage that! Then I find that Nick has managed to locate (and open)some dog treats. I guess he wanted to see if they could float, because I locate said dog treats in Ollie's water bowl. Sigh....

Finally, yesterday was probably one of the wildest days of all. We had several errands to run after school and Nick was NOT happy about that. He screamed and threw a fight and we eventually had to carry him out to the car. He threw a fit at every single store we went to. This included K-Mart, Target and Sam's Club. He started off at K-Mart by running into the store and promptly throwing himself on the floor and screaming. I wrestled him into a shopping cart (again, not a fan) and fought him trying to stand up or get out of the cart for the entire shopping trip. This is pretty much the way it went at every store, but we had to get stuff done and Nick doesn't get to determine what we do, so we just powered through it! He has also been doing this new thing where he lets out super loud yells whenever he feels like it. He doesn't do it when he's upset or anything, just seems to do it randomly. So, we got lots of interesting looks and some stares while we were out and about. Sometimes I feel like yelling at people that he's not trying to be bad and that he has Autism, so they can just stop staring already!! I've managed to keep my mouth shut so far :) Maybe next time I'll just say, "Go ahead and stare, he has Autism, so he's not paying attention to you anyway!!" :)