Don't Say You're Sorry

It is with a heavy heart and a conflicted mind that I am writing this current blog post. We took Max to have an evaluation with a Developmental Pediatrician today. This is the same appointment that I've been putting off or telling Allen to schedule. (knowing darn well that he'll never schedule it) I felt that the Pediatrician wouldn't be able to give us any kind of a diagnosis. I figured, we'd leave the office just as confused as when we'd walked in. I thought the doctor would tell us that Max has a speech delay, but that he wasn't really sure what all was going on. Honestly.....that is what I completely expected him to say.

Instead, after and hour and a half of talking with us and playing and doing some testing with Max, this is what he said. Max functions speech-wise at the level of a 14 month old. His imitative/play/social skills are a the level of a 21 month old child. Max's real age is 31 months. The doctor told us that Max is absolutely on the Autism spectrum and gave him such diagnosis. I felt like someone had punched me in the gut....really?? Max?? He is "certainly on the spectrum?" My social, loveable, cuddable, eye contact making little guy? As we all know though....there is a spectrum....a broad range of severity where people can be diagnosed. Admittedly, the doctor said that Max is on the mild end of the spectrum. He is considered more mild than Nick was because Nick had temper tantrums and lots of trouble transitioning. So....although he is a tad less severe than Nick, basically, they are pretty close to each other as far as where they fall on the spectrum.

The doctor suggested that we get Max into some daycare for a day or two a week and hire a Speech Therapist to come work with Max at home. I have no idea where we will find this and how in the world we will afford it? I just have to say that Max is actually receiving services from Infant and Toddler Services, but they SUCK!! They are not doing therapy with Max at all....instead they come and talk to the parents about strategies to use at home. Well, this isn't our first rodeo and that is NOT what we need......we need someone to do actual therapy....sigh.

I have spent the entire day on the verge of crying. Is this somehow my fault? Did I do something wrong? Is it genetic? I feel overwhelmed......my husband started to cry in the car on the way home from Max's appointment. I found myself being the strong one. I told him that Autism is just a word.....just a diagnosis......it doesn't change anything. We have been dealing with two children with Autism for 2 1/2 years now....and just because someone finally labeled our kid, that doesn't mean that anything is going to change or get harder. I told him that God must know that we can handle these two beautiful little boys. I told him that things happen for a reason. But really, I am wondering if we will ever catch a break? Will it ever get easier? Is there a God? If so, what is his reasoning....how far are we to be tested? Can I really handle two special needs children???

I'm trying to be positive....really, I am. I am so grateful that they are not so severe that they will never speak or potty train or tell jokes. I KNOW that it could be so much worse. I could have a child who is fighting for their life and batting cancer or some other disease. There are so much more worse things than Autism....even two kids with Autism. But dammit....why did it have to happen to us?? I'm scared....what if my marriage doesn't survive this? What if I can't do this? But...I know I will survive this....because I always do. And I know that I can do it.....because I was raised to know that I can do anything! I could never, never give up on my boys. Nick speaks in sentences now.....and hopefully I can see Max's future in the things Nick can accomplish. So....please don't tell me you're sorry to hear this news. Give me a hug and let me be just a little sad....but know that I wouldn't change my life for anything and that I love my boys just the way they are. I'm not sorry....I'm sad, scared, grateful, nervous, worried, relieved.....but I will never be sorry.

Tough Choices....

Recently my husband and I have made one of the hardest decisions since becoming parents. We took Nick to the hospital and had him put under anesthesia for elective plastic surgery. A lot of you don't know me in real life or haven't met Nick in real life, so let me explain.....

When Nick was born (3 weeks early) he had a tiny red birthmark on the left side of his neck. Allen and I noticed it of course and thought it was so cute that he had a birthmark. The nurse told us it was called a "strawberry" birthmark and never mentioned it again. After a month or two we realized that the birthmark was growing! It was not only getting larger around, but it was actually growing out from the side of Nick's neck. In a panic, we rushed Nick to the pediatrician where I confessed that I thought he had cancer or something. The doctor explained that this type of birthmark was often referred to as a "Strawberry" but the medical term was "Hemangioma." She said these type of birthmarks occur when blood vessels grow out of control. There is no medical explanation for why this happens, but it is present most often in preemies and most hemangiomas are on the face or neck area. She told us it would probably keep growing for awhile and she would keep track of its size at our doctor appointments. She also said that it would stop growing by the time Nick was 2 or 3 years old and would then begin to reduce. She told us that it should be completely gone by age 5 and that no one would even be able to tell it had been there.

So, for the next couple of years we watched as the birthmark got bigger and bigger. At it's biggest, it looked like a bright red bouncy ball sticking out of the side of his neck. Other children and adults often pointed or stared. The stupid thing bled if Nick hit it wrong (because it was basically a giant blood vessel). We had lots of parents come up to us and tell us that their children had also had a hemangioma and then point out where it had once been on the child as proof that it completely disappeared. Finally, when Nick was about 3 years old, the hemangioma started to get smaller and more flesh colored. It became almost flat and almost the same color as the rest of his neck over the next year or so. However, even though it was less noticeable, it still looked like a big piece of skin hanging from his neck. As Nick entered school, kids began to question us about it and point it out. We waited for it to go away, but as Nick neared his 5th birthday the thing stopped getting smaller.

Finally, we decided to contact a plastic surgeon at Children's Mercy to see what they could do. The surgeon explained that it was classified as a "birth defect" and would therefore be covered by our insurance. Nick would have to go under anesthesia and would have a large scar, but he did not think the birthmark would get much smaller on its own. So....we scheduled the surgery for Oct. 26th and waited. As the date neared, I started to second guess myself. Maybe it would go away on its own? Maybe we really didn't need to do surgery? Maybe we should just wait a little longer? Maybe I was a bad parent to risk the life of my child for cosmetic reasons.

I decided we had made the right choice when Nick was playing with a neighbor boy (who also has Autism) just a few days before the surgery. The boy pointed at Nick's neck...."WHAT is THAT?" I said, "It's just a birthmark, it doesn't hurt." Little boy..."Is it like a mole?" Me..."Yes, kind of." Little boy, "Is it growing INSIDE his body?" Me....."Sure....kind of." Little boy, for the rest of the night, "That's Nick and he has a MOLE GROWING INSIDE HIS BODY!!!" Yup....8 year old with pretty severe Autism notices and makes a big deal out of it.....so will other kids as Nick gets older. He is already "different" so I don't think kids need any other reasons to tease him.

The day before surgery, we were told it had been scheduled for 1:30 p.m. No food after 1:30 a.m. and clear liquids only until 10:00 a.m. The reason for the lateness of the surgery? They schedule by age because little kids don't understand why they can't eat or drink. I tried to explain that Nick didn't understand either due to his special needs, but my insistence fell on deaf ears.....sigh. So, I indulged Nick the night before surgery. We went to T-Rex and had a good dinner, ice cream afterwards and built a dinosaur to take to the hospital. We managed to stick to the pre-surgery rules about eating and drinking with minimal protesting. Nick was VERY upset that he could not have an apple, but that was about it.

Children's Mercy did a wonderful job of keeping Nick calm and unafraid before surgery. His dinosaur got a hospital gown just like Nick. They were patient with his reluctance to have his blood pressure taken and played along when he was silly. The nurse asked for his name when we checked in and Nick replied, "Meeeeow, Meeeeow" in a perfect kitty imitation. The nurse said, "Oh my, we will have to call a Vet, because we have a kitty here, not a little boy!" This got an enormous giggle out of Nick :) They gave him something to relax him before they separated him from us and Nick was oblivious when he was wheeled back to surgery with his dinosaur and in a wagon. They also reassured us that he would be given gas to put him to sleep and given the I.V. after he was asleep. HUGE relief for mommy who was terribly afraid that Nick would be scared and upset and in pain while they tried to get an I.V.

Just one hour later, the surgeon came to the waiting room to tell us that he was done, the surgery had gone great and we would be able to see Nick as soon as he started to wake up. Another hour or more passed and a nurse called to let us know that Nick was still out cold. He didn't want to wake up and they had anesthesia in the room with him. I think my heart stopped after that phone call. About 20-30 minutes later, the surgeon came back out and told us Nick was waking up and they had removed his breathing tube. He told us that Nick is sensitive to anaesthesia and narcotics and we should make sure to tell the doctor if he ever has to have surgery again. We finally got to see Nick a short time later as he was wheeled out of recovery. He was back to his defiant self as he immediately ripped the top two bandages off the surgery site and pulled out his I.V. :) He sucked down two cups of apple juice and ate a package of teddy grahams and we were allowed to leave. In the car, Nick insisted over and over "I want MORE BEARS!!" We stopped at 3 gas stations on the way home before finally locating the coveted teddy grahams.

Nick is doing great now and it has been one week since his surgery. He returned to school two days after surgery and doesn't even touch the bandage that still covers his stitches. Soon we will see what Nick looks like without a birthmark for the first time in almost 5 years! I think we made the right decision even though I sometimes think that we should have just accepted Nick exactly as he was. I know now that it wasn't that we couldn't accept him, but sadly that we knew some others could not. I think he'll be grateful when he gets older :)

Where I was meant to be........

I'm having one of those days.....a really tough day. Most days I am so grateful for the things Nick CAN do that I don't really think about what he CAN'T do. Ever since he was first diagnosed, Nick has only progressed, albeit slowly at times. I know there are a lot of kiddos with Autism that regress and stop speaking completely or never speak at all. There are some kids that can't allow their parents to hug them without screaming in pain. There are some kids that will never live to reach the age (5) that my son is rapidly approaching. There are so many things to be grateful for and yet, sometimes I am so darn ungrateful that it makes me sick.

Am I the only one that has complete days where I just feel terribly sorry for myself? I'm not sure why today is one of those days, but I just have this sinking feeling in my heart. I've come close to crying several times throughout the day.....sigh. I think I've talked about this feeling enough with close friends and family that they don't care to hear it anymore. I think these days are just when it hits me that my child will never be what I imagined, dreamed and hoped he would be. It's a kind of mourning for the child that existed once upon a time in my mind and heart long before he was even a tiny being in my body. It is true that I have lost that child, but I have also gained the love and hope and adoration of the type of child I could not have imagined in my wildest dreams.

So...for the rest of the day, I'll let myself mourn the idea of the child I once had. I might even let myself cry just a little bit. At the same time, I'll sit here and watch...my son....in only dragon underwear, jumping off the coffee table while using a CARS blanket as a makeshift cape. I'll see the twinkle in his eyes as he tells me that he is a kitty and makes "meowing" noises and rubs against my legs. I'll giggle when I put his little brother in his room for timeout and Nick says, "Yeah, take nap." And then, maybe I'll remember just how perfect and special and important this little boy is to me. And I'll know that I may not end up where I thought I'd be, but I'll always end up where I was meant to be.

Success and Sadness

Well....I have to say that we have had a fantastic summer thus far. Nick has just amazed me in more ways than I can remember, imagine or count. Autism is a complex thing that only becomes more mysterious and scary and beautiful as the years pass. Nick has continued to speak in sentences and respond to questions. This morning when I opened Max's bedroom door, Nick said (in a very excited voice) "BABY!" I said, "Yup, I am waking up the baby." Nick says, "I love baby." I felt my heart just leap out of chest as soon as he said that. It was quite the spontaneous sentence and very unlike anything I have ever heard him say. I was a little jealous, because Nick has only ever told me "Love you, Mama" if I ask him to say it or if I tell him I love him first. I know I will hear it from him without a prompt one day. I remain grateful that I will ever hear it from his lips....I know some children who will never speak those words.

Some other interesting statements from Nick recently include, "I LIKE popsicles" "I want a shirt on" "Let me do it" "I want read" and "I gotta go potty." Some other responses to recently asked questions include: (after I asked, who peed on the bed?!?) Nick, "Ollie." (The dog, who actually was the culprit.)
Me: "Nick how many hot dogs do you want?" Nick: "Hmmmm.....two."
Me: "Nick, which t.v. show do you want to watch?" Nick: "Mickey Mouse."
Me: "Nick, you can have a treat for going potty...what do you want?" Nick: "CUPCAKE!"
Later, at the cupcake store.."Nick, which cupcake do you want?" Nick: "THAT one!" (pointing at the cupcake piled high with pink icing.) I know it doesn't seem like much.....but there were days that I never imagined I would ask a question that Nick would understand or be able to answer. The days of trying to guess what Nick wants while he screams and cries and tantrums in frustration are over!!!!

This summer we have decided to bravely embark on a new activity....bowling! Over the last year, Nick has enjoyed bowling with plastic bowling pins and various other objects in his classroom. He got a full size play bowling set for his birthday and has been delighting in knocking them down ever since. We keep thinking that we will take him bowling, but ultimately decided that the noise and activity of a bowling alley would be too much for him to handle. Finally, this summer we ran out of excuses! Allen found a program on a website called www.kidsbowlfree.com where you can sign your children up for 2 free games of bowling every week. So.....last week we decided to brave the bowling alley and figured at least we wouldn't be out any money if we had to leave. As soon as we walked into the bowling alley, Nick got animated and very, very excited. He said, "I bowling!!!" and tried to run over to an alley and start bowling right away. He was NOT happy that he had to wait for us to go get an alley from the cashier.

The afternoon was bittersweet for many reasons. First of all, when we walked into the alley, we walked almost smack dab into one of Nick's classmates. The classmate (who I'll call "C") recognized Nick immediately. He ran right up to Nick and said, "Hi Nick!!" and waved really big and acted excited. I think he thought we planned to get together with his family :) Nick on the other hand completely ignored "C" and tried to push right past him. I had to physically grab Nick by the shoulders several times and say, "Nick, look it's C from school, say "hi." Finally Nick seemed to shake it off and waved and said, "HI C!" We ended up bowling in the lane next to "C" and his papa. It was cute because, they ran around the whole time saying, "Hi Nick" "Hi C" over and over. The stood next to each other for a picture and shook hands and gave each other high fives. I was pretty excited for the interaction up to this point until I made a very important
realization. It was obvious that Nick and "C" were happy to see each other and really wanted to communicate. It was also glaringly obvious that they had no idea how to do this. I know they introduce themselves in class and say "hi" and shake hands. So....all the behavior I saw was memorized as socially appropriate over the last school year. Don't get me wrong....I'm very, very happy for Nick's progress. It's just hard to watch Nick struggle to overcome Autism's grasp. He's trying so hard and doing so well.....but every little success also reminds me of how far he has to come. I will say that we went bowling again this week with "C" and the interaction was a little better. Nick had a REALLY hard time waiting his turn to bowl, but we did work on saying "your turn" when it was time for "C" to bowl. Nick had an AWESOME time.....he started saying "I bowling" as soon as he spotted the bowling alley! In between his turns bowling, Nick did a lot of stimming. (We'll discuss that issue later) He generally played with his hand in front of his face and spun around and around in circles. "C" caught on a little and also took up the spinning in circles deal :) It was a workout for mommy and daddy trying to keep up, what with all the spinning, and running in front of other bowlers and trying to sneak ahead of his turn at bowling. It was worth it to see the look on Nick's face when he realized we were bowling and to witness the excitement after every knocked down pin. I am so proud of Nick for overcoming all the barriers and the parts of this activity that must be very uncomfortable for him. We'll be back at the bowling alley next week!!

My Little Escapees

Well....I knew it would probably happen eventually and it finally did. My children escaped aka went on the lam aka made a break for it!! This is how it all went down: on Saturday I got ready to get in the shower and get cleaned up for work. I have a routine. I go around the house and make sure all doors are locked and dead bolted shut, get the boys settled with a cartoon of their choice in the living room and hop in the shower. Fast forward 10-15 minutes and I get out of the shower, wrap a towel around me and check to make sure the boys are doing o.k. Normally I find them in the exact same positions I left them in. This day, however, I find the front door standing wide open, t.v. off and no little boys in sight. I spot their open Spongebob umbrella at the bottom of the driveway. My heart stops and for a second I don't know what to do. Finally, I run to the bedroom, throw on a robe and run outside in the pouring rain, no shoes, towel still on my head.

I almost ran directly into my neighbor who was headed up my front steps. She asked where my husband was and I told her that he's at work and I can't find my kids. She tells me that she found one of them in her backyard and the other playing in the drainage ditch. She took them over to another neighbor's house to get dried off. I ran across the street to that neighbor's house where I found both boys safe and sound and my neighbor on the phone with 911. I tried to make it light and said, "well I see you found my children!" My neighbor (in a rather demeaning voice) says, "THEY WERE PLAYING IN THE MIDDLE OF THE STREET!" Hmm...ok....I look down at my robe and bare feet thinking that it is pretty obvious what happened, right? Maybe some people are perfect mothers who never shower, feed their children all organic food and have children with perfect manners. I, on the other hand have children who burp loudly and then scream "Scuse me," who eat french fries and who break out of the house while mom's in the shower to play in the Damn rain!!! So....I gathered up my little escapees, thanked my neighbor and took my children home. Apparently the neighbor thought we should wait to go home until the police arrived....hmmm....I think not!!! As I walked in the door, the phone is ringing....it's Allen wanting to know why the neighbor called the 911 center we work in to report our children in need of care :) He explained it all to the responding officer and they didn't end up coming out after all....whew.

Once we made it safely inside the house, I again locked and dead bolted the front door and asked Nick to show me how he opened it. He immediately flipped the deadbolt open......wow.....I have no idea when he learned to do that. The next day, when I got ready to shower, I made sure lock all screen doors, deadbolt, regular lock and put child safety doorknob locks on all doors. I believe an escape attempt was made because I did find one deadbolt unlocked at some point during the day. When I took my shower, I locked the boys inside the master bedroom with me so I could watch them from the shower. They reminded me why I don't typically allow this. Max continuously tried to get in the shower with me (full clothed), unraveled rolls of toilet paper and shut off the DVD player which required me to get out of the shower over and over to restart the DVD. Sigh. We have been researching additional locks for the TOPS of all our doors and will hopefully be installing them in the next couple of days. Until then, hopefully there will be no more escapes and no more 911 calls!!

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!!!

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!!" :)

Don't Call me Autistic

I have debated long and hard about whether I should write this post. For the sake of education and understanding, I've decided that it's a worthwhile subject. I hope no one takes this the wrong way and everyone takes my opinion with a grain of salt. If you've ever said this to me, please know that I am not upset with you and I understand that you didn't know any better :)

Ok....deep breath....I'm just gonna put this out there. I have a problem with the word Autistic. I cringe when I hear others talk about "Autistic" people and when my child is referred to as "Autistic." If you must describe my child as having a neurological disorder, I would prefer that you say that he has "Autism." Now, if you know me in real life, you know that although I am "a tree hugging liberal," I don't usually get caught up on labels. HOWEVER, my mind was certainly made up in this instance after reading Jenny McCarthy's first book about Autism. She explains (and I agree) that although her child DOES have Autism, he is more than Autistic. In the same way, yes, Nick has been diagnosed with Autism, but he is not defined by that diagnosis. Nick is technically Autistic, but he is also sweet, rambunctious, lovable, handsome, independent, smart, silly and so much more.

Hence the reason this blog is named "So Much More than Autism." I have made it a point never to refer to Nick as "Autistic" in front of him. I don't ever want him to think that he is and can only ever be Autistic. When I think about him, I don't think about my "Autistic" child. I think about my boy with the beautiful blue eyes, who gives awesome hugs, loves to jump on the bed and is currently infatuated with the eating of pepperoni. If he is always described as or dismissed as "Autistic" then how will he ever overcome that label? Basically, I'm afraid that calling my child Autistic would become a self-fulfilling prophecy. While Nick will always have Autism....he can certainly be much more than just Autistic. I don't ever want him to think that I have no higher expectations or goals for his future.

So....sorry for the novel, but please don't call my child Autistic. He has Autism, much in the same way that a person may have Cancer. That doesn't make the person become Cancer. They are simply someone afflicted with a disease that they are trying to overcome. Just as a little disclaimer here about my view on Jenny McCarthy. I think it is wonderful that a celebrity is bringing so much awareness around the treatment and diagnosis of Autism. I support anything that she and any other parent of a child with Autism does to advocate for their child. I do NOT agree with all of her views about the correlation between Autism and Vaccinations and I don't agree with her idea that you can "recover" a child from Autism. However, she is a mother just like me who is doing what she thinks is best for her child and I can't fault her for that. I do think she is very knowledgeable and I wholeheartedly agree with her view that our children are SO Much More Than Autism.

We've come a long way, baby!!!

It's been awhile since I updated, but the last week has helped me realize just how far Nick has come. Nick only had school one day this week, so he has been running wild for the last few days. Allen and I met with his teacher on Wednesday for Parent/Teacher conferences and were very pleased with his progress. He has met every single one of his IEP goals for December!!! He was late in meeting one of them, but his teacher thinks he should be on track to meet his March and May goals as well! We got a "brag sheet" from his paras that said how proud they were of Nick, how fun he is to work with and what a little character he is. (I'm pretty sure that last one is code for ornery, mischievous and/or rambunctious.)

Anyway, we were sitting in the meeting with his teacher and she was telling us about how Nick has the "routine" down. He knows what he is supposed to do and when he's supposed to do it and if he isn't sure, he just watches the other kid's leads! While she was talking about this, I had a sudden flashback from Nick's first year in Preschool. We went to his first ever IEP meeting and chatted with his future teacher, therapists, principal and everyone else. This occurred a couple weeks before he was to actually start attending Preschool in November 2008. After the meeting, his Preschool teacher offered to show us the classroom. We were very excited to see it and got to the room just as the afternoon class was arriving.

I watched the kids all hang up their backpacks, wash their hands, go to the restroom if needed and sit down at a little table. At this point the teacher explained that they were "signing in" for the day. The kids all pulled out pieces of paper and practiced writing their names several times and turned them in when they were done. The teacher explained that Nick would just practice scribbling until he was able to actually write his name. We only stayed for about 10 minutes and as soon as I hit the hallway, I burst into tears. My mom and Allen were both with me and I explained that there was NO WAY Nick would ever be able to do that stuff. I simply could not ever imagine that Nick would write his name or follow any type of routine. My mom is a retired elementary school principal with a background in special education, so apparently she is used to this kind of reaction. She chuckled a little, gave me a hug and told me that Nick would be just fine. She said she knew that he'd be able to do it and that you can't expect it to happen on the first day. I remained doubtful and cried the entire way home. Nick did start school eventually and I guess he mostly figured out the routine. He never did write his name.....I saved all the papers they sent home with his scribbles from signing in at the beginning of the day. He rarely talked during that time and didn't seem to come very far by the time the year was over. He had also failed to meet almost all of his IEP goals by the end of the year. So....we fought (and won) to have him placed in the "Communications" (Autism) Preschool class. Nick began in his new class in June 2009 and has continued in the same classroom ever since.

So.....back to the Parent/Teacher conference discussion. I got teary eyed just thinking about how much Nick has accomplished since he began with this new class. Imagine that Nick knows the routine now!!!!! He met his IEP goals AND I am proud to say that he can write and verbally spell his NAME. Nick walks around labeling things and learns new words just about every day. In fact, at Parent/Teacher conferences, his teacher mentioned that he has his colors all figured out, so they are working on concepts like "big and small." Literally three days after this meeting, we were in the car and I was getting Nick out of his car seat. He was very insistent about something and kept saying the same thing over and over, although I had no idea what he was saying. I finally stop what I'm doing, look where he's pointing and listen very carefully to what he's saying. He points at a tree and says, "BIG TREE." OMG....I am so shocked that all I can do is smile ear to ear and tell him, "you're right....that IS a big tree!!!" He gets a self satisfied grin and looks very pleased that I have understood what he's trying to tell me. All I can think is, "We've come a long way, baby!"

I'm a Bad Parent......not really.......but.....sometimes I feel like it

Ok.....so, tonight at work I was telling some stories about Nick and I had this sudden, depressing feeling that I'm a terrible mother. It all started when we dispatched a call about a missing 10 year old child with Autism. The mother told us that she had not seen the child in 2 hours. So, one of my co-workers asked me, "wouldn't you keep a closer eye on a kid with Autism?" He went on to ask me if I had a "leash" that I used with Nick. Yes...he was serious. I should mention that the un-named co-worker is a single guy with no kids. Anyway, I told him that Nick is a tad old for a leash, and that we have tried similar things and Nick freaks out when we use them. I remember trying to use one of these contraptions at the Iowa State Fair when Nick was about 2 years old. He laid down on the ground and refused to walk at all. As soon as you took the backpack off of him, he was tearing down the street like an escaped convict!

So, the point is.....I was explaining to this co-worker that Nick has no regard for safety rules. He routinely launches himself down an entire flight of stairs, runs away from us and generally beats the crap out of himself and his brother. Nick has no built in fear when he becomes separated from us in any situation. I started relating all of the times we have "lost" Nick and suddenly realized that he has escaped pretty often. One of the most memorable times was when we went to Silver Dollar City (which is a large amusement park type place for anyone who doesn't know). Nick and Daddy were playing in a very large water park type area of the park. Daddy told Nick that they were done playing and started down the stairs with Nick right behind him. Well....apparently Nick decided that he was not done playing and he turned around and went right back inside without his daddy. By the time Allen made it out of the area, I was standing there asking where Nick had gone? Allen turned around to show me he was right behind him, only to find that Nick was long gone. We both panicked and immediately started looking nearby for Nick and calling his name. (not that Nick really responds to his name, but we were scared....so give us a break.) After several minutes, there was still no sign of Nick, so Grandpa and Grandma joined in the search. We looked frantically for a good 10 minutes before I finally spotted Nick in a whole other area of the park. I took off at a dead sprint and found him happy as a lark, playing with some stupid squishy balls in a play area. He hadn't even realized that we were gone and didn't know enough to be scared. This was just last summer, so he was 3 1/2 years old....most kids would have been searching for their mommy and crying....but not Nick.

I related another story when we were all visiting at Grandpa and Grandma's house. We were hanging out in the living room and Nick was terrorizing the cat and generally causing havoc. (nothing unusual here) Grandpa went upstairs for some reason and I thought Nick had followed him. About 30 minutes later, Grandpa came back downstairs and said, "where's Nick?" Well....we weren't too concerned yet, but we started looking around the house in his usual places. We figured Nick had gotten tired and laid down on his bed and fallen asleep. He's done this multiple times at Grandpa and Grandma's house and it was fairly late in the evening. After a fair amount of time spent searching the house, we still couldn't find Nick. At this point, I was holding the house phone just waiting to dial 911 and have the police come help us find him. I couldn't have cared less what anyone at work thought about me losing my kid....I was just so scared. Just as I was ready to call, Grandpa decided to go look outside because he realized that the garage door had been left up. This terrified me, because Nick is able to open the door from the house to the garage and we normally keep the garage door closed to prevent an escape. Sure enough, Grandpa found Nick outside.....he had climbed quietly into our car and was sitting in his car seat just hanging out! Even now, just thinking about how differently that could have gone makes me shiver. What if he had decided to walk down the street and either got lost or got taken by someone driving by? So many things could have happened...but thank god they didn't.

Hopefully Nick will develop those natural fears that most kids have much earlier than the age of four. Until then, we just have to watch him like a hawk when we're out in public. We have also discussed putting alarms on the doors that go outside. At least that way we'll know if he does try to go outside alone. Even if some kind person were to find him, Nick couldn't tell them where he lives or who his mommy is. He doesn't know his phone number and heck....he doesn't even know his last name! We have just now gotten to the point that if we ask, "What is your name?" He will respond, "Nick." In all reality, I know that I'm not a terrible mother, and I know that other parents lose their kids and it makes them feel awful too. It just scares me SO much more that Nick doesn't understand that he is lost :( In case anyone was wondering, the call I was talking about at work? The 10 year old girl with Autism was found safe and sound!

My little police man

Well, we managed to make it through the day with only a couple of attempted acts of violence against Max...LOL! I made sure to have my eyes on the boys at all times. I was still able to get in some time on the treadmill while they played nicely in the same room. They have both discovered how fun it is to put items on the treadmill and watch them fly off.....insert eye roll here. I had to stop after about 30 minutes when Max tried to get on the treadmill with me. Later on, I took a shower while Nick and Max played with dinosaurs in the bathroom...sigh. I guess it's going to be awhile before I get any alone time, but at least I'm not constantly worrying if Nick is killing Max.

Nick did manage to push Max over on one occasion today, but at least he didn't bang his head on a table this time. I also stopped him from pushing Max over when Max tried to turn the t.v. channel. I should add that Nick has become our little policeman when it comes to Max. He is constantly correcting him and making sure that he isn't doing something he shouldn't. Today, it was while I was drying my hair after my shower. I was watching a show and Max kept pushing buttons on the DVD player. It wasn't affecting my show, so I was not terribly concerned. Nick on the other hand was extremely worried about this. He started pushing Max every time he saw him reach for the buttons. I kept telling Nick not to push him and showed him that I was ok with Max pushing the buttons. He finally seemed to get the point and stopped pushing. Yesterday, Nick was upset that Max kept opening the toilet lid while I was in the bathroom brushing my teeth. (Is it obvious yet that they follow me everywhere?) Nick slammed the toilet lid down every time Max lifted it up. This resulted in some smashed fingers on Max's part and I had to kick them both out of the bathroom! Another day, Max kept attempting to let Oliver out of his crate while Ollie was in "time out." Nick was trying to keep the crate handle shut while Max was trying to open it. I have been calling Nick my little policeman, but I guess this is actually a good thing? He is actually recognizing when Max is doing naughty things and attempting to correct him. He doesn't always go about it the correct way, but at least it seems like something that is developmentally appropriate aka being the tattle tale. LOL

Here's another story about something irritating that Nick does that makes me immeasurably happy. I caught myself sighing and rolling my eyes today and then realized how far Nick has come, which brought a big grin to my face. Nick is super excited about labeling objects. As a result, he just HAS to identify everything and you HAVE to acknowledge that he identified said object. Today we were watching a cartoon and every 30 seconds, Nick was up in my face saying something. This how it went....Nick: "PUPPY, PUPPY, PUPPY." Me finally: "Yes, Nick it IS a a puppy." Nick walks off with a huge grin on his face. 3o seconds later....Nick: "BUNNY, BUNNY, BUNNY." Me...sigh: "Yes you are right....that is a bunny." Again Nick walks off with a self satisfied look. We repeat this scenario approximately 20 more times with various other items. Just as I am getting extremely exasperated with this whole "game" I start to remember how I used to pray that he would be able to speak and label objects eventually. I also realize that he is waiting for me to look him in the eyes and acknowledge his speech, just like we used to do with him. What a smart little boy!

This is why I can't be a Stay At Home Mom....

I have a rather interesting situation going on with Nick right now. For once, I am just at a loss about what to do with him. Nick has always been really rough with his little brother, Max. I remember about a year ago when we had an appointment with Nick's Developmental Pediatrician. We brought Max, who was only crawling at that point and just wanted to be involved in whatever his big brother was doing. Max did something that really upset Nick and Nick hauled his leg back like he was going to kick him. I got to Nick in time and he never actually connected, but I saw how wide the Dr.'s eyes got. He said, "yeah, you probably shouldn't leave them alone.....ever." I have taken that advice to heart, but it's hard to ALWAYS be with Max....especially when he ONLY wants to be with his big brother. Lately, I have noticed that Nick strikes out at whoever or whatever is nearby when he is upset. For example, he will push his little brother down or throw an object while he is throwing a fit. In the past, we have caught him pushing his brother down several stairs and I've often seen him "tackle" Max like a line backer!

I guess what I'm saying is that Nick is a rough playing little boy and he really enjoys any type of sensory input he can get. Even though I know everything I know about Nick, I am at a loss about what to do over his actions today. On one occasion, I guess he decided that Max was in his way and he pushed him off the couch. Max fell backwards and hit the back of his head on the coffee table. Another time, he pushed Max for some unknown reason and Max fell and hit his head on our nightstand. The scariest time was when I walked into the next room for some reason and I heard Max start screaming. I came into the kitchen and saw Nick with his hands around Max's neck. I don't know if he was trying to stop Max from screaming or if he was really trying to hurt him. Shortly thereafter, I was standing right there when Nick again tried to grab Max and push/pull him to the ground. On each instance, I took Nick by the arms, looked him in his eyes and told him "you do not put your hands on your brother....you are hurting him!" I said it in my best stern mommy voice with my most serious eye contact. Each time Nick's lip started trembling and he looked ready to cry. I made him tell Max "sorry" and give him a hug. I don't know if he understands, but I just don't know what else to do? Apparently he didn't learn his lesson, because he kept doing it over and over again! At this point, I'm actually getting afraid that he may really hurt his brother.

On the bright side of things, the boys and I went out and played in the snow for about 45 minutes. Nick had an awesome time and had me cracking up when he decided to roll all the way down our snowy hill of a front yard :) He also did a lot of snow angels and lots of jumping in the snow. I showed him how to throw snow balls which earned me several sneak attacks with large chunks of snow as hard as Nick could throw them! Max is still really unsure about snow and mostly wandered about aimlessly. He did pick up some snow a couple of times, so I think he's warming up! I'll try to post some pictures of the sneak attacks when I get a chance.

I know that I just got done complaining about Nick's behavior today, but Max was in rare form as well. Mostly, he was a big pain when I was trying to get out of the house to get to work on time. He managed to let the dog out of his crate twice after I'd put him up! Finally, I got Oliver in the crate and Max was right behind Nick and I as we walked to the garage...or so I thought. I'm strapping Nick into his car seat and here comes Oliver tearing out the garage door! I start hollering for Max and come around the side of the car to find him standing in the snowy yard, one shoe off, playing in the snow. Sigh. So finally, I strap Max in his car seat, put Oliver in his crate and get new socks for Max. It's days like these that I am actually grateful to have to go to work!

One Fine Day

Today was the big day! We went to the Sprint Center to have a meet and greet with Elmo before the Sesame Street Live show. Before we left the house, I told Nick what we were doing and asked if he wanted to meet Elmo.....his immediate response, "No." We stopped by Burger King on the way there to pick up some GFCF French Fries for the boys. I said, "does anyone want french fries?" I heard Nick mutter something from the backseat, but couldn't understand what he said. I said, "I can't hear you....you Do want fries or you Don't?" Nick answered, "I DO!" LOL We picked up the french fries and headed out for our adventure.

We got to the Sprint Center at about 12:15 even though we weren't supposed to be there until 12:40. We showed our meet and greet letter to the doorman and were escorted back to a conference room where several other families were waiting. Almost right away, Grover and The Count came out for a visit. Nick and Max took pictures with them, but were not terribly excited. We were told that Elmo was NOT coming out for the meet and greet...WTH? We thought we had wasted a good portion of the day, even had daddy take off work to come with us....for Grover and The Count? Anyway, we started looking at our letter and it said to meet at the soundboard at 12:40. It was only 12:30 and we were pretty sure that we had NOT been at the soundboard when we met Grover and The Count. We started asking around with the employees and finally were told that we had been taken to the wrong meet and greet. We were going to a "special" meet and greet with only one other family! So, we were finally taken to the soundboard where we met with an employee and were escorted to another area of the building. It wasn't long before we saw Elmo and The Count rounding the corner! (Big Bird tried to come, but he was too tall to fit down the hallway!) Nick saw Elmo and says, "Elmo?" He gave Elmo hugs and kisses, high fives and sat in his lap. He needed a little encouragement, but he wasn't scared and was about as excited as he gets! Max was not real sure what to think about Elmo, but he wasn't afraid either.....just a little tentative. We took lots of pictures, said our good-byes and were escorted back into the theater. We explained that we did not have tickets and that Nick probably wouldn't be able to make it through any amount of the show anyway. We were told that they could find us some seats and we could see if Nick would be able to stay.

While we were waiting to be escorted to some seats, the lights dimmed and the show began! Nick was curious and began edging closer to the stage. He covered his ears, but didn't scream or try to run away! We agreed to be led to some seats to see how it would go. We all sat down and Nick and Max became entranced by the show! Allen and I just looked at each other in shock! This was our child who became inconsolably upset at the same show, just one year ago? We both got a little choked up and excited at the same time. We took tons of pictures of Nick calmly watching the show, just to prove it actually happened. We made it to intermission and I called work to make sure someone would cover for me so I could stay for the rest of the show. Nick got cotton candy and a furry Elmo hat for being such a big boy!

It was a little rough for awhile after we sat back down for the second half of the show. Nick was restless and he did start screaming and throwing a tantrum. He pulled on my arm and said, "bye, bye." I just ignored that little request and pointed out that Cookie Monster was on stage. He became distracted and got wrapped back up in the show. Max was dancing, stomping his feet and clapping with the audience.....what a cutie! Both boys did a great job and we finished out the rest of the show with just some minor restlessness. At one point we saw a parent who had to carry a screaming child out of the theater. I was shocked as I thought to myself that for once, it wasn't my child who caused the disruption!

On the ride home, I turned around and asked Nick, "did you have fun meeting Elmo and watching the show?" His response? "Happy......Happy." Me too, Nick.....me too :)

We get to meet a STAR!

I have to share some VERY exciting news that we just received today! First though, I need to share a little back story so everyone understands our excitement. Last year, around Nick's birthday, we realized that "Elmo Live" was coming to perform in Topeka. At the time, Nick was IN LOVE with Elmo and we just knew he would be SO excited to see the performance. We paid $100 for 3 tickets, took the night off work, drove an hour to Topeka, and dropped Max of at Grandma and Grandpa's house. Grandma and Grandpa gave Nick an envelope with a $20 bill and instructions to spend it on something ridiculous that he really wanted. We were so excited to see the look on Nick's face when he realized that we were watching Elmo!! We got to the theater and bought Nick a t-shirt and a $15 Sesame Street flashlight thing that he had to have. We took our seats (right up in front) and ate licorice while we waited for the show to begin. The lights dimmed, music played, Elmo made his appearance and Nick.....well......Nick began screaming at the top of his lungs. He looked frantic and tried to get out of his seat and run out of the theater. I kept telling him, "look, it's just Elmo!" I really thought that he would calm down once he realized that he was seeing his hero in person, but he didn't. We moved to the very far back of the theater in hopes that his screaming would stop upsetting the other kids and that it would be quieter. Well...they had that damn music blasting so loud through speakers everywhere that it even made me want to cover my ears. We went outside of the theater to try and get Nick to calm down. As soon as we went back inside, the screaming began again. I tried showing Nick how to cover his ears and a super nice usher went and got some earplugs for us to try. Nothing worked :( Nick was so hysterical that people began moving out of our section and complaining to the usher. They made some comments that hurt my feelings so badly. We finally decided that we should leave if Nick wasn't able to enjoy the show. I asked the nice usher if there was a chance that we could meet Elmo after the show if we hung around outside. She told us that the cast left immediately afterwards to drive to another city. As soon as we left the building, I broke down in tears. I cried the whole way home.....mostly because I was SO unprepared for the reaction that Nick had. I have refused to even attempt to take him to any similar shows and told Allen that we will NOT be going to Disney World until Nick can handle the shows. Which brings me to today's exciting news.....

After the unfortunate Elmo Live experience, I sent an e-mail to the company that puts on the shows. I told them what happened, asked if Nick could meet the characters the next time they are in town and suggested they have a "sensory sensitive" showing in the future. I got some stupid form e-mail back that told me they do not have sensory showings. Jerks. I recently mentioned to Allen that Sesame Street Live is going to be at the Sprint Center this week and that there was no way in hell we were going...LOL. He didn't mention it to me, but my thoughtful husband sent another e-mail to the performance company explaining what had happened before and asking if there was a chance Nick might be able to meet the characters. Well....today he got a response telling us to be there at 12:40 on Sunday for a Meet and Greet with the characters!!!! They said that they can guarantee Elmo will be there and at least 2 other characters also! We can bring 4 people so we are trying to get someone to cover for Allen at work and think we will take Max also! I still don't think Nick is ready to deal with all the sensory issues involved in watching the performance, but he will be so happy to meet the characters!! I can't wait to see what he does!

Shear Madness

As a mom, there is one big piece of advice that I pass on to other parents. Don't ever fight a battle that you can't win! Today, I waited Nick out and (huge sigh of relief here) won a major battle in the war on potty training. I told him that it was time to go potty and he immediately started screaming and throwing a fit. I ended up carrying him into the bathroom and putting him on the potty. He tried to get down right away and I just kept putting him on the potty and saying, "no, you need to go potty." He thrashed around, fell off the potty and screamed his little head off. I finally told him, "you cannot get off the potty until you go pee pee." I'll tell you what...this was really hard for me because it was time to eat dinner and we were trying to get out the door to run some errands. Allen and I ended up sitting with Nick for a good 15 minutes before he finally succumbed and went potty. We cheered like crazy and let him have some pepperoni (his new favorite) as a treat. Later in the evening, Nick jumped right up on the potty and went pee without any fight! He stayed on the potty and even pooped a little bit. Yay Nick!!!!

We also had another GIANT success with Nick tonight. We took Max to get his first ever haircut today. We went to a place in Olathe called Shear Madness.....it's a place for kids only. They have tv's that play cartoons in front of each station. They have plastic cars that kids can sit in and pretend to drive while they are getting their hair cut. We figured it would be a cute place for Max to get his first haircut at. So, I make sure that Nick takes notice while Max is getting his hair cut. I also say things like, "maybe one day you can be a big boy and let them cut your hair!"

I should mention that Nick has really huge issues with having his hair cut. He screams and thrashes around and often gets so upset that he vomits :( We have had to resort to cutting his hair at home with clippers. Allen has to hold Nick on his lap and restrain him while I cut his hair. Nick screams at the top of his lungs and cries and thrashes around until he is all sweaty. He tells us, "all done, all done, all done" over and over. As a result, Nick's haircuts are few and far between. We wait until he is really shaggy before finally resolving that we will have to do it again. Grandpa has helped a couple times, but even he refuses to trim Nick's sideburns because it upsets him too much. Hair cutting sessions usually end with tears on the part of both Nick and Mommy :(

Sooooo......hence the big buildup to the story that Nick ALLOWED SOMEONE TO CUT HIS HAIR!!! We told the hairdresser that Nick has Autism and freaks out when someone tries to cut his hair. She said they have lots of kids with Autism come into the shop and she'd give it a try!! So, we had Nick get up into the car and she showed him the clippers (which were super quiet). She let him hold them and pretended to tickle him with them. Then she immediately trimmed his side burns and the back of his neck. She proceeded to wet down his hair (which he did NOT care for) and trimmed the rest of his hair up with scissors. I won't lie and say that it was completely without incident, but what a change from the norm!! Nick did whimper a little and try to pull his head away from the stylist. He also let out a few really loud yells, but he generally handled the whole thing really well! We plan to make another appointment with the same hairdresser in the future. She told us if we mention that Nick has Autism, they will allot her some extra time to work with him. Nick was super excited that he was awarded a sucker for being such a good boy and we went right over to grandpa and grandma's house to show off the new haircuts!!