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.
Wednesday, October 6, 2010
Sunday, July 18, 2010
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!!
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!!
Tuesday, June 15, 2010
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!!
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!!
Wednesday, June 9, 2010
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.
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.
Thursday, May 13, 2010
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.
Wednesday, April 14, 2010
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.
Saturday, April 10, 2010
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.
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.
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