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.
Tuesday, December 21, 2010
Tuesday, November 2, 2010
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 :)
Wednesday, October 6, 2010
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.
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.
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.
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