Sunday, February 2, 2014

31x34 from 14

Hello everyone!! Yes another blog post where the time is flying by faster than ever. I looked back on the date of my last post and around that time, my younger brother and his wife told our family they are having a baby... and all of the sudden, the baby is due next MONDAY! As we all know, life keeps moving and I don't know about you, but the older I get, the faster the time seems to go.

31X34 from 14... what does that mean? That is one way to quantify how much Cole has grown since last year. This past fall, I got spare clothes back from his school. I originally sent the size 14 jeans in September of 2012. Fast forward to January 2014 and he's gone through sizes 14, 16, 18, 20, 30x32 and now he's wearing mens 31x34 jeans. 5 sizes in 16 months. I can easily slip on his shoes to run and grab the mail and yes, I officially look up to him when he gives me those sweet kisses. (Did I mentioned he's only 12?) Crazy. Even those I cherished every moment with him when he was a baby, I have a hard time imagining him at just over 7 lbs. Now he weighs more than I do.

I'll give you an quick update on our family over the past several months.

PAT: He's doing great. He is very busy at Hartfiel. He's been in his role as President for over a year and it's going really well. I'm so proud of him. He started there 8 years ago in sales and has since worked his way up to President. I can honestly say I've never been around someone as driven as he is. He's always been that way. Ask my sister... Before we started dating at age 14, Pat came up to Tara and introduced himself. It went something (exactly) like this... "Hi, I'm Pat. I'm going to marry your sister one day.". Obviously the fact that it actually happened is quite amazing, but he has that attitude about everything he does. He sets his mind to something and he is going to do it. Period. Luckily for the boys and I, Pat is just as committed to us. I swear he must have more hours in his day. I don't quite know how he gets everything done with his job and still makes plenty of quality time for of us. He still manages to find plenty of time for coaching football, snowmobile rides, playing catch, bikes rides, wrestling around, boating and so much more. We couldn't ask for a better husband and father.

ME: Not too much is new with me. In my role as the household CEO I am kept incredibly busy as well. I wouldn't have it any other way. I am still teaching group fitness at the YMCA. It's a wonderful outlet for me and I love having a "job" that truly impacts people's quality of life. It was out of my comfort zone. I've never been one for getting up in front of a group of people. Teaching classes has completely changed that. I wish I would have done this years ago!

COLE: Besides growing faster than we can keep up with, he's a had a good year. He's in 7th grade now. If you were to see Cole in person, you would also hear how much lower his voice is getting. He keeps asking when he's going to get his other voice back. Yes, puberty is a tough thing to explain to an Autistic child. We literally take it day by day. Cole has crushes on girls. Although this is nothing new, he's always been a ladies man. Seriously though, we do work very hard with him to give Cole boundaries in this regard. He is a very touchy person and loves to touch necks. He even touched the neck of a nurse while my dad was in Mercy Hospital this past fall. The difficult thing is the more attention we draw to something, the more Cole tends to do it. It's a tough balance.

That brings me to YouTube. Good ol' YouTube. I swear if I had the time, I would make it my mission to mandate MUCH improved parental controls on YouTube. You can't even block a video on there- are you kidding me? I rant because YouTube is how Cole was introduced to a few swear words. We have our computer in our kitchen, facing out where we can see and hear what's going on. Cole was innocently watching a guy fix his lawn tractor. All of the sudden, the guy shouted, "oh shit, what the hell?". Our first instinct was to immediately tell Cole to watch something different. Bad choice. We should have ignored it. Instead, Cole got a reaction from us and took close note of what caused it. Now he's blessed with a much more colorful vocabulary and we have no idea how to stop it. It's making it hard to take him places because we have no idea what might come out of his mouth. And it's not just swearing. While learning opposites at school, Cole learned the opposite of skinny. You know where this is going. Yep, in public he will tell people they are fat. Not in a mean way, just matter-of-fact. There is nothing like checking out at SA with your perfectly handsome, normal looking son as he tells the cashier she is fat. Good times. At least it was Pat who was with him when Cole asked a man if he had a baby in his tummy. It's times like this when you realize just how severely Cole lacks social skills, empathy and theory of mind. We love him no matter what. And most often, Pat and I share our stories and can't help but laugh.

We took the boys to Chicago in August. It was Cole's first plane ride. He did fantastic on the plane. He even got to go into the cockpit to meet the pilot and wear his hat. He was patient in the airport and had great manners on the plane. Things even went well on the way home. Pat had to stay in Chicago for business, so I took the boys home alone. Cole did fantastic. It was like he was a diamond medallion member. Needless to say we are hoping to do it again and possibly go somewhere a little further this time.

We also had a few trips to the Noble Family Farm. This year, Cole got to ride Grandpa's 4-wheeler for hours and even visit another farm to pick sweet corn. We are so blessed to have the Noble Family in our lives. They adore Cole and treat him so well. Their kids are wonderful with him and the weekends at the farm are always some of the most fun we have all summer.

We went on our annual Cooney Family vacation to Cabin O Pines. This year, Cole insisted on staying the entire week. We were nervous, as he can get tough to entertain after a few days, but again, he did fantastic! He rode Grandpa's 4-wheeler a lot and spent time kayaking, boating and swimming. Pat actually got to spend a lot of time fishing and we had a huge fish fry late in the week. Cole was thrilled that his friend Alli was at COP this year. Alli is the girlfriend of Brittany's cousin, Coyer. (are you confused yet)?! She is a delight and has so much patience with kids. Cole adores Alli. He was excited when Alli and Coyer surprised Cole at the Twins game and they even stopped by for a visit this fall. He of coarse is constantly asking if she's going to be at COP this year! :)

You'll see a few pictures from Cole at hockey. The one of him alone is one of my absolute favorite pictures of our handsome boy. The other hockey picture is from a practice where Cole's barber, Jerry, came to work with him for the hour. He's cut Cole's hair since he was a baby and is so good to him. *check out how big Cole is compared to Jerry!

Cole's really into sending iMessages to Grandpa Denny. He's even learned how to send him videos. Cole will talk to Grandpa about his day, smile into the camera, tell him he loves him and send it off. Then he sits and anxiously waits for Grandpa to reply, which he always does! Technology is amazing!

CONNOR: Our wonderful, amazing, smart, kind boy. I know I've said this plenty but it should be repeated.. he is BY FAR the BEST brother on this planet. We could not have asked for a better young boy to be Cole's brother. He is simply incredible with him and often at times when Pat and I are about to lose our cool. He knows how to interact with Cole, how to calm him, when to give him space and how to make him laugh and smile. I've always worried that Connor doesn't have a neuro-typical sibling, but when I see the boys together it's obvious Connor doesn't see it that way. They truly love one another and seldom fight or annoy one another. They have their own language- literally. Cole can make funny sounds and somehow Connor has figured out a way to make those sounds part of the way they play. He's amazing and Cole loves him for it.

Connor is in 5th grade. Sniff sniff, the last year of elementary school. How can the boy I've been driving to and from school every day be ready for middle school? Connor loves school. He has a wide array of friends, great kids from wonderful families. He had fun playing football with the same group of boys. He loved having Pat coach him and bring out his aggressive side. He also played traveling baseball and will again this spring and summer. He still does gymnastics. He practices year around and competes during the winter months. This year we've been to Chicago for a meet and we travel to Las Vegas next month. This past weekend, Connor placed in all 6 events and won the all around for his age. We are proud of him.

Thanks for checking up on us. I'll try to post again soon with more than just a family update. I could write for hours on Cole's Autism and all of the things we go through, some wonderful and some really difficult. In the mean time, stay warm, cherish your loved ones and quality time with those you love.

Wednesday, June 26, 2013

Dream a little dream

Dreams, we all have them. Not the dreams that happen while we sleep, the dreams you have for yourself, your children, your friends and family. For most people, the sky is the limit. I grew up raised by loving parents who constantly reminded me that I could do anything I wanted to do. How wonderful is that! Think about it.... we are born into this world with a HUGE blank canvas and it's up to us to paint it full of all the wonderful things life brings to us.

As Cole has become more vocal about his wants, needs and his dreams for his future, I'm realizing his canvas won't be painted with as many colors as most of us. What do I mean by this? For most, we have endless choices and opportunities in life. We can make it what we want. We are capable and God has blessed us with the skills we need to do these things. We have a gigantic Crayola crayon box full off beautiful colors to complete our canvas. For Cole, he was handed a crayon box without an array of yellows and purples (he doesn't like those colors anyway). Cole looks at his crayon box and he thinks it's perfect (which it is) but the rest of us look at it and see parts that are missing, opportunities he will never have.

I can't stress enough that Cole is very happy with the Crayon box given to him. He doesn't know anything different and in fact, he thinks he can paint the same canvas we have with the limited colors in his box.

Just yesterday, he told me he will drive my truck when he's 16. Why wouldn't he think that? He sees the neighbor kids getting their licenses and driving around. He knows you need to be 16 to drive. And he's 100% sure he'll be doing that. After all, he's been driving our lawn tractor for the last 6 years with perfection. Why would a car be any different? The reality is, there is a 99% percent chance he never will. Cole has very limited ability to reason, recognize safety issues, understand cause & effect; let alone sit through driver's ed training and pass a permit test. How are we going to explain this to him? Especially when he sees Connor drive. :(

And earlier this week, Cole and I had an interesting conversation. There is an adorable girl in his class named Megan. Cole adores her (see the picture of them at field day). Cole said to me, "You and Dad went to school together, right?". I responded, "Yep, we did." Cole replied, "You got married and have a house with kids. I will marry Megan and we will be together. We will have kids." And he jumped up and down in excitement. Of coarse that's what he wants to do, that is what mom and dad did. I know Cole can and will have a girlfriend. It's the house and kids part that breaks my heart. Again, the reality is Cole will never own his home and he won't be a father. Don't get me wrong, I pray every day for this not to be true, but acceptance is part of the "grieving" process. And if you recall, the day we received this diagnosis, the doctor said we will grieve this like the death of a child. He was right. You never get over it. You accept it but you don't get over it.

Earlier in June, Pat, Connor and I were up in Brainerd for Connor's 10U AAA traveling baseball tourney (they took 2nd- woot woot). We arranged for Cole to stay with family and at the respite house while we were gone. We had an awesome time and really enjoyed our quality time together. During one of Connor's games, the 12U teams were playing on the adjacent field. It happened to be the Blaine team so I watched a bit during our warm ups. It was fun to see how much bigger those boys were and how much more developed they were as players. Then it hit me... Cole could be one of these boys. And it was a huge reality check. We can't even bring Cole to watch part of Connor's games. And here are boys his age, pitching the ball 65-70 MPH and making diving catches in the field. Pat and I grew up as athletes. We can't help but wonder what could have been for Cole. At 12 years old, he's 5'6" and 130 lbs. He's been strong enough to carry me down the hallway for two years. His dad started 4 years as a D2 college football player. The doctors think Cole will be 6'4" and he is one solid, strong, intense boy. Imagine him on the football field or parking a baseball over the fence!!! We'll never know. He wasn't given all the crayons in his box so he could try.

That is what makes this hard. I wish Cole had the CHOICE in all of this. If he chose never to drive a car, buy a house, get married, have children or play in one sport I would be 100% ok with that- IF IT WERE HIS CHOICE. But it's not.

We wish more than anything that Cole had the biggest box of crayon colors in the world to paint his canvas with. We are doing everything possible to give Cole the tools he needs to add colors to his box. And thankfully, he's done very well so far. We started out 10 years ago (as of July 1) with what felt like a small handful of grays and black crayons. I still remember Cole getting M&Ms for just sitting in the chair at speech for more an 1-2 seconds, and the goal of getting him to say "I want" seemed like a pipe dream. With years of incredible hard work, Cole has added an array of beautiful colors to his palate. And the picture he's painting is one of the most beautiful things I've ever seen.

Here are some fun things I wanted to share- be sure to check out the video and attached photos. I think you'll have to copy and paste the youtube link.

* Cole had an awesome trip to the doctor this spring. He had to get caught up on immunizations. Cole was so brave and for the first time EVER, we didn't need 4 people to hold him down or sedation to give him shots. He said he was going to get shots like a big boy. And did he ever. The nurses came in, gave him shots in the arm. Cole didn't even flinch. Afterward he hopped off the bed and told them, "Thank you, I did such a good job!"

* Cole's dentist, Dr King, retired this month. Dr King has been outstanding at helping us get Cole through dental exams. It's taken YEARS. At the last visit, Dr King told Cole he was retiring. It took Cole a while to process this. After Dr left the room, Cole and I finished up and walked out. Cole was walking ahead of me and stopped at another patient. He tapped Dr King on the shoulder and said, "Cole's going to miss you. Can I have a hug?" Everyone around was smiling ear to ear. That's my sweet boy.

*We got all of the damage repaired in our home!!! For those of you who don't know, we received a one-time grant to repair damage Cole has done. This included new sheet rock (backed with plywood from floor to ceiling), a completely new bathroom, new doors (he had slammed them so much they opened into the hallway and had cracks), a special "calm room" in our basement for Cole and some other things. It turned out perfect! I put a picture up of what Cole's walls looked like when we took the wall padding down. WOW!!

*The video is of Cole at his spring concert. He loves being in front of a crowd and waved to everyone he knew. He even has a small solo. :) He sure looked cute in his back to the 50's clothes! Copy and paste the link, it's worth it!

*Finally, he got a new push mower. Sounds less than exciting, right? Not to Cole. You would have thought we took him to Disney. He is a grass cutting machine and when our push mower died, we had that new one in less than an hour. ;)

Thank you for reading my blog. My goal is to give you a snapshot of what life is like when you have a child with Autism. It's a complicated disability that affects nearly every aspect of both Cole and his family's life. We love him dearly and he brings us an immense amount of joy and pride.

I hope you never look at a box of crayons the same. And more importantly, I hope you use every single color in your box to paint your canvas. It's a gift that not everyone has.

Wednesday, November 28, 2012

Some GREAT news!!!

How is it that SIX MONTHS has flown by since I've posted??? And how do people find time to blog once a day, or even once a week!?! I have so much to update and I know I won't be able to fit it in, so I'll just have to post again soon.

Ever since July 1, 2004, the day of Cole's Autism diagnosis, Pat and I take things one day at a time. Selfishly I'll admit, it can be daunting to look far into the future and envision what lies ahead for Cole and ourselves. I try to spare myself the anxiety, stress and fear of the unknown.

Realistically, we are too busy putting out fires. We simply don't have the luxury to plan things far out, guarantee we can stick to commitments we make and 'going with the flow' is not part of our vocabulary. Don't get me wrong, we try very hard to make our lives as "normal" as possible, but we also know Cole's limits. Not everyone understands the decisions we make and that's ok. We are getting better at saying no sometimes, leaving events early or having 1-2 of us stay at home. We are figuring this Autism thing out as we go, and even though not everyone understands it, Autism is the filter for EVERYTHING we do and it impacts literally every facet of our lives.

I was looking on the MN Autism Society website this week. As I was scrolling through, I came upon this... "1 in 88 children being diagnosed each year, our quest to find what works for our one child seems as daunting as the autism-related Google results page. Often, the formula for more “good days” is found in a combination of therapy, social skills training, education on safety, and the commitment of a caring community." A few words caught my attention: more "good days". It brought me back to the day Cole was diagnosed. Our Dr told us our lives would never be the same, that we would grieve this diagnosis like the death of a child and the most important job we had been assigned was to advocate tirelessly for Cole. He was right about all three.

In taking things one day at a time, our mantra is to have more good days than bad. We use all of the tools in our arsenal but many days, it just isn't enough. Cole has other plans. Pat and I fight this "war" every day, as any parent would. At times it seems our plan of attack works really well and at other times, Cole drops a grenade and everything blows up. Lately we've been dealing with an increase in his aggression. It's happening at home, school and out in the community. Sometimes we can see Cole building and we know he'll become aggressive but other times, it comes out of nowhere. When Cole is in a "mood", Pat doesn't like to leave me alone with Cole. He's nervous Cole will hurt me. Cole is 11 years old but he's much bigger. He's growing out of size 16 jeans, wears a size 7.5 shoe and a few months ago weighed almost 110 pounds; most of it solid muscle. When you combine that with frustration, lack of coping skills and inability to reason- it can be really tough. We are working closely with school and an in-home Autism specialist to address his aggression and other behavior concerns we have. Pray for Cole. We need to get him back on track. He needs his troops behind him.

On the bright side, we received some fantastic news today. Cole's amazing Case Manager got confirmation today that next year our family will receive a one time grant to do up to $40,000 of environmental modifications to our home. This is HUGE!!! I will try to post pictures but many of you know the Cole has done quite a bit of damage to our home. We have a person who specializes in assessing the damage and designing modifications and/or repairs to prevent further damage. More news to come on this!!

Here's the quick update on our family and what we've been up to...

In September I went to Cape Cod with my mom, sister, sister-in-law and her mom/grandma. We rented a house for a week and toured the area. It was a wonderful time. We loved Cape Cod and thoroughly enjoyed our time out East.

We also went back to the Noble Family Farm this fall. The boys had a blast, as always. This time it was even more exciting, as we surprised Cole the morning we left with dune buggies. Noble's were having them repaired and we had them parked in the driveway to bring down with us. Cole's reaction is something I'll never forget. He was super excited to "drive fast and take chances".

Cole was thrilled when we bought a new John Deere riding lawn mower. He literally drove our other one into the ground. He loved going with Pat to bring it home. He got to see the back area of the store and the salesperson Mike gave him a baseball cap. And of coarse when we got it home, it was Cole who showed Pat how and what to turn on so we could get it off the trailer. :) I can't wait for tonight, the plow attachment came in so Cole will be in for another treat. Yes, he plows our snow, too!

He loves Zamboni's. I took him to open skate this past weekend. The driver noticed Cole and waved at him at every turn. The driver even turned on the lights and honked the horn. Cole thought it was the coolest thing ever. And again, he knew every move the driver was making... "it's time to use the board brush, he's got two more circles left, etc."

In October we took the boys on the Osceola train. It's a really fun thing to do with your family. The drive to Osceola is pretty and there are nice places to eat lunch. Cole loved snuggling with Pat on the train. We saw Eagle's nests, rode over a high bridge and ate treats. Cole improved significantly from the first time he rode. A few years back, he lost patience while waiting for the train and (in front of a crowd of people), started hitting his head off the hoods of people's cars.

The boys loved Halloween. Pat was out of town, so it was just me. Thankfully a few of my family members came over. We ate soup and got the boys ready. Cole was Batman and Connor was a zombie. Cole was all about the tractor and trailer. Grandpa hooked it up and off we went. Grandpa started out driving but after only a few feet, Batman took over the wheel. He navigated through the streets and only went to houses where he knew they did not have pets. Connor didn't complain one bit as he hung out with Cole while we passed a trailer full of the neighborhood kids. He stayed with his brother and only after Cole was ready to head inside did Connor join his friends. I didn't even have to ask him to hang with Cole. In Connor's mind, he was with his best friend and that was all that mattered. He's so good to him.

We enjoyed a nice Thanksgiving at the Schusted side of the family. Cole lasted about 4 hours, which was big for him. He loved helping Grandpa Al carve the turkey. Things ended on a sour note, as he got anxious toward the end and punched Connor hard in the back for no apparent reason. It left Connor in tears, with a big red mark on his back. Cole felt bad about what he did, so he ran upstairs and stared slamming doors, yelling, etc. Needless to say, we left after that. We are thankful he lasted for as long as he did. We got to catch up with family and enjoyed looking through the family tree album Grandma Schusted made for all of her kids.

As for the rest of us, life has been good and quite busy. Pat's job continues to go well. He's been traveling a fair amount to many areas around the country. We were excited to be invited to attend a Regional Leaders Meeting in Grand Cayman. Pat and I will go there for a week in February. We honeymooned there over 15 years ago and haven't been back since. It will be nice to meet some of the out of town people he works with and visit a place so special to us.

Connor has been doing great! His football team won their second consecutive championship game this year. Pat had a fun time being an assistant coach. Pat ran the defense. The team allowed only 41 points scored against them in 12 games, 10 of which were shutouts. It was great season. Now we're moving into the competitive portion of the gymnastics season (Connor trains year around). Connor moved up to level 6 this year. He's excited about the challenges that lie ahead of him and has been working hard to learn the advanced skills. When spring rolls around, Connor will play traveling baseball this year. He tried out, along with 35-40 other kids and made the top traveling team for the city of Blaine. 12 kids made it and he was one on them. We are very proud of him and look forward to that as well. Connor does very well in school and likes to work hard at it. He loves to read and excels in math. He also got invited to try out for a special district wide choir but couldn't due to his gymnastics schedule. Not sure where that talent came from, I can't even sing in the shower!!

I'm doing well. As I posted in my last update, I recently went through training to become a Group Fitness Instructor. It's so much fun and a great personal challenge for me. I'm teaching three formats at the YMCA: Bootcamp, Ripped (a weight and cardio class) and Latin Hip Hop. It's been a lot of work to get up to speed on three formats, but I love it! I wish I would have done it years ago.

Thank you for taking time to read my blog. It means a lot to me and I hope you come away with a better understanding for what it's like to live with and parent a child who has Autism. I also hope it put things in perspective and gives you an even greater appreciation for the little things in life. Happy Holidays and God bless.

Monday, May 28, 2012

Cool stuff happening!!

What a wonderful spring it's been!! The weather has been delightful and it's enabled us to get a jump start on all of the fun activities that come with the warmer weather. If you get one thing from this post, please watch the video of Cole on the boat. It's priceless. You may have to copy the url into your browser. Just look at how happy our boy is!


Cole is absolutely pumped that spring is here! He has been spending hours outside- riding his new bike, mowing the lawn, watching the neighbors mow the lawn, taking trips down to Grandpa's to (you guessed it...) mow the lawn and he's already had a few rides on our boat. Cole is 100% an outdoor kid. He's happiest when he's outside, no matter what the weather and no matter what he's doing. It's been fun to see him greeting the neighbors as they walk by and seeing the gigantic smile on his face when Pat takes him for scooter rides. Cole has also become our personal weatherman. We've had our share of storms this spring and Cole is the first one to make us aware. He's come a long way. He used to be so afraid of storms. Now he has a little anxiety but he's more concerned about getting to the basement and finding candles, just in case.

As I said, Pat has taken Cole out on the boat a few times already. Pat took some video of Cole driving the boat- you have to see it. Pat has also been excited that Cole seems to be enjoying fishing. Just last week they went to Coon Lake and Cole himself caught 3 sunnies and a crappie! For those of you who know Pat, it had to be the highlight of the month for him. Another son who loves fishing! Now we just need the water to warm up a bit so we can start tubing and swimming in the lake.

Earlier this month, Cole had his spring concert at The MAC School. Each grade (4-7) sang a song and then they all sang one together. Cole's class sang "Bare Necessities". We thought Cole might do pretty well, since he requested we put the song on his iTouch so he could practice. Cole did fantastic!!! He even wore a shirt with a collar and buttons! I'll put up a link to the video on youtube so you can check it out. It's amazing to see how great these kids do, especially when you consider they all have some form of Autism. I was so proud of Cole. In the past, he's been more concerned about the microphone and even goes up and starts making sounds into it. This time, he did exactly what he was supposed to do and he looked so darn handsome. It's moments like this when we know, without a doubt, that he is in the right school.


Cole was so excited for his Uncle Brendan and Aunt Brittany to move to their new home in Plymouth. I took Cole over to visit a few weeks ago. He looked inside for about a nano-second and immediately asked if he could mow. Lucky for him the grass was long and he got right to task. He loved having lunch at their new house and talks all the time about having a sleepover. He told me he's going to sleep downstairs with Connor and go to Skyzone... we'll see! Speaking of Skyzone (indoor trampline park), I took Cole to Zero Gravity yesterday. It was so rewarding to see he and Connor having a great time. Cole behaved so well. He fit right in and had a really fun time. He jumped and ran around, even asked me to video tape him. When he was tired, he would come snuggle me and tell me he loved me, then he was off to jump again. This was a true reminder of the dramatic progress he's made. The simple things that are easy for most families and finally becoming possible for us, and it's really exciting!

Another fun thing we did with Cole was the light rail. Pat took Cole this weekend on the light rail, down to the Mall of America. Cole loves both of those things. He knows the way around the MOA like the palm of his hand. The highlight from this trip was getting his picture taken with a few characters from Spongebob!

As for the rest of us, things have been going well. Pat's job is going great and he's slowly not having to travel quite as much. The boys are really good for me when Pat's gone, but Cole of coarse prefers to have daddy at home with him. Pat has been having fun being an assistant coach on Connor's baseball team and teaching Connor how to pitch!

Connor has started baseball. His team is 3-1 and he's loving the challenges that 10U bring. The kids pitch, you can steal bases and the kids are hitting the ball harder. He's still doing gymnastics. This summer he will train for level 6, another step up from where he competed this past year. He had another great gymnastics season, placing 3rd in the state and 18th in the region, during his first year at level 5. He won state in both parallel bars and pommel horse. At regions, he was third overall in p bars!!! Not bad when over 120 kids competed! We love that he participates in something unique from many of his peers. And the sport provides him with so many great skills and personal development, discipline and work ethic. Connor had track and field a few weeks ago. It was a really warm day- over 90 degrees! It was so much fun to watch. I love the tug of war. Connor was jazzed. He wore his baseball gloves and if you look at the picture on here, you can see the intensity in his face.

I've been doing well too. I feel like I'm cramming to get tons of projects done before Connor is home for the summer. I can't wait for "100 Mommy and Connor Days". We have all kinds of grand plans and love having the summer to spend so much quality time together.

I have some exciting news. I made the decision a few months ago to become certified as a Group Fitness Instructor!! It's been something I've wanted to do for several years and like I told myself, "I'm not getting any younger". Just this past weekend, I completed both my Turbo Kick (kickboxing) and Hip Hop Hustle (cardio dance) training. It was rigorous and tough to do the trainings (9a - 5p) for two days straight. But I made it and I passed both! I applied at the Andover YMCA this week and hope to get the ball rolling soon. Now it's time to practice, practice and practice some more. Wish me luck!

Hope you've enjoyed the highlights of our spring. It's been great so far and we only hope the summer brings many wonderful memories.

Thursday, April 5, 2012

Autism- the positive side

Happy Autism Awareness Month!!

I invite you to join me in spreading awareness about this mysterious disability. My hope is for you to pause a moment before making judgement on a parent or child. If you see a child acting in a non-neurotypical manner, please resist the urge to make judgements or assumptions and instead pause to consider it might be a family struggling with the numerous challenges of Autism.

This disability can be very daunting, humiliating, puzzling, frustrating, exhausting and sad. But it can also be rewarding, amazing, insightful, comical, empowering and joyful. I heard a great quote today from a girl on the Ellen Show, who has overcome many tragedies in her life... "There are tough things that happen in life. You don't always have a choice in many of them, but you do have a choice as to how you react and grow from them." You're right, if we could turn back the hands of time and change something so Cole would not have Autism, of coarse we would. But that's not possible. What is possible is the fact that anything is possible. Every day Cole does things that we never thought he would. Today he was trying to tie his shoes and learning about appropriate ways to show affection and who he can show affection to. Last week, it was learning to use hand brakes on his new bike. In a few years, maybe it will be making change for a dollar or reading a chapter book. Who knows....

We stay focused on the many blessings Autism has brought to our lives and doing everything in our power to make Cole's life the best and happiest it can be. And he IS happy.

Today during my visit to him at school, his therapist told me he is "the social butterfly" of the school. Cole knows everyone, and everyone knows Cole. He greets everyone he sees and has a nickname for each person. Usually he drops the first letter of their name, so Connor is "onnor" and cousin Cooper is "ooper". he he he. I just had a conversation with my Dad about this a few days ago. He was so proud of how Cole was able to attach the tractor trailer to his lawn tractor, mow the lawn and then back it up into the tight parking spot by the shed. My Dad wasn't home to see Cole put the tractor away and when he got home, he thought someone helped Cole put everything back in it's place. But no, Cole had done everything all by himself (park the trailer/tractor, put the key in the right place and lock up the shed)! Cole is so darn cute on that tractor. He wears his headphones for protection and gives us a huge smile and a big thumbs up. My Dad and I both agree that Cole is finding so many things he enjoys in life and he truly is a happy, happy kid. He is passionate about his interests and the people he loves. My are we blessed.

It doesn't help that Cole has the most incredible, loving and compassionate brother in the world. And honestly, that's an understatement. Connor is so proud of his brother. He's protective of him and at such a young age, already has concern for Cole's future. In fact Connor just told me a few days ago that he's going to live within one hour of Cole when they grow up, "so I can spend time with him and sleep in his bed with him one night every week."

I have one more story about Connor that I have to share. Last Friday, Cole earned a day at home from therapy due to good behavior. Connor had school that day, so it was just Cole and I at home. While Connor was getting ready for school in the morning, I asked Connor if he would like for Cole and I to come and have lunch with him at school. Connor was so excited in his response and immediately said, "YES!!!". I reminded Connor that Cole might have a hard time in the chaos and could act silly or inappropriate. I then asked Connor again if he wanted us to visit. His response: "Mom, he's my brother and I love him. I WANT him to come to see me at lunch. Can I ask him myself, please!?" So I let Connor ask Cole, hoping Cole would say yes. But he didn't. Cole takes everything so literal and when he earned a day off from school, there was no way he was stepping one foot into any school. Connor was disappointed and made me promise to keep asking Cole all morning. Sadly, Cole didn't agree. Maybe next time.

We've done some fun stuff this winter. In January Pat and I took Connor to Orlando, FL for a gymnastics meet and mini-vacation. It was Connor's first time in an airplane, so he was really excited! Connor did well at his meet and then we had a three days to spend at the parks. The three of us had so much fun. Pat and Connor went on tons of rides together and there were very few lines. The weather was perfect, so we got to swim and hang out at the pool as well. Connor's favorite park was Epcot. He loved seeing all of the different countries. We went there twice! While at Universal, we had to get our picture taken with the characters from Monster's Inc, one of Cole's favorite movies.

Pat and I took our eighth trip to Ixtapa, Mexico in February. We rented a wonderful condo right on the beach. It was such a nice week. We ate at fantastic restaurants, read books by the pool and walked the beach every day. We even ran the beach five of the mornings we were there and I took a 2+ hour walk with a group of people down to the marina to see the alligators. Pat went deep sea fishing. He lucked out and caught a huge sailfish. It was over 8' tall! We are incredibly fortunate to have this quality time together and to have family and friends who generously help out while we're gone.

The first night of our trip was a little stressful, actually quite stressful. It's a long story, but when we called home to see how the boys were, my parents said Cole was in a lot of pain from getting his finger nail slammed in something. Cole would not say what happened and none of the people who were caring for him that day saw what happened. We called again later in the evening and the situation had gotten worse. Cole's fingernail was completely black and it was red and swollen. We could hear him wincing in pain in the background. My parents were doing everything they could think of to help Cole. (he refuses to take medicine). Cole let them ice his finger and elevate it. And Connor lovingly convinced Cole to pout a Band-Aid on it. Cole NEVER wears Band-Aids!!

Nothing was helping and Cole was in a lot of pain. He kept crying and saying, "It's burning. My finger is broken." It was heart-wrenching for all of us. This went on for a few hours and finally my dad decided to take Cole to the ER. Only Cole refused to go. So my dad called a local police man who is also a close friend. The police officer came over at midnight and tried to calm Cole and look at his finger. He tried to convince Cole to take a fun ride in the police car, but Cole refused again. In the meantime, my mom called the nurse's line and they said if more than 1/2 the nail is black, he should be seen by a doctor.

The police officer suggested to have the EMTs come look at Cole's finger. There is no charge for an ambulance to come to the house. So that's what they did. At 12:30 at night, the ambulance shows up and checks out Cole's finger. They told my parents it wasn't broke and there was not much that could be done. It didn't help with the pain, but at least we knew it wasn't broken. That night, it took Cole a long time to fall asleep and he woke up several times throughout the night in pain. The next morning, he slept in and didn't leave for school until 10am. He woke up and said, "my finger is all better!". And it pretty much was. He ended up losing his finger nail, but took it really well. He's so brave.

We also had a successful trip to the dentist. For the first time ever, the hygientist was able to do 75% of a full cleaning on Cole's teeth! Cole actually cooperated and willingly went into the velcroe blanket. It took two people to do the cleaning and by the end Cole was frantically and aggressively getting out of the blanket, but it was a success. He thought the cleaning tool was like a zamboni on his teeth! Check out the video...

There is so much more I could update but instead I'll post again soon! Please remember April is Autism Awareness Month. Like I said before, please find it in your heart to have more compassion and understanding for these wonderful people. They love life just like we do and want many of the same things, it just doesn't come as easy for them.

Saturday, January 14, 2012

retarted- what it really means

I saw this article posted on a blog and had to share it.

Monday, January 2, 2012

Peaks and Valleys

So much for honoring my promise to update more often. Yes, life once again has gotten in the way. Somehow, almost four months have flown right by. As the title of this entry suggests, we've had our share of peaks and valleys over the past few months.

Cole is doing great at his new school/therapy environment. He loves going to "academics" in the afternoons and still cherishes the one-on-one time with his therapists in the morning. We have visited Cole several times and he's worked hard to earn lunch visits from both Pat and I. Every time I visit, Cole is saying hi to all of the kids and staff. He has a nickname (one he's made up) for literally every person at MAC. And he also has a flirty way of tickling some of the female staff. When I was there, he went up to a gal and playfully tickled her elbow and said, "I'm getting your arm." He's very comfortable there and everyone lights up when he greets them.

One thing that's been a challenge is the rides to and from school. For some reason, Cole and another student on the van are not getting along real well. They tease each other, sometimes hit one another and often get loud and silly. It's been a challenge to say the least. Not to mention, the parents of the other child have called a few times to complain about Cole and how their child is reacting to the situation. It's hard because the other child is dropped off first, so by the time Cole gets home, he's calmed down and he's not emotional about anything that's happened. So we've tried REALLY hard to set up a reward system for Cole. We ask the driver each trip to and from how Cole has behaved. If he's "naughty", he does not get a tally mark and he loses a privilege at school. If he's good, he earns a tally mark toward a reward (lately it's been lunch dates and a visit to Santa). It seems to be working for the most part.

We had conferences for Cole a month ago. They could not have gone better. His teacher and therapists showed us Cole's report card. It was his first one ever, and he's in 5th grade. I've attached it to this entry so you can see how well he did. Of coarse it's relative to Cole and his goals, but we'll take the great progress and positive comments. When the teacher brought it out at the conference, I had to fight to keep my composure. I was SO PROUD of my not-so-little guy. There was a time when I never thought he would receive a report card, let alone one of this nature. I wanted to show it to the world.

They also showed us a lot of the academic work Cole has been doing. It's incredible. He's getting very high scores on his spelling tests, mostly perfect. He's reading and comprehending. And his math skills are significantly improving! He took a test on parts of the body and only got 1 wrong. It's so rewarding to see all of his hard work. And he's so proud of it. When he brought home his poster from when he was the Student of the Month, he went right into his room and pinned it to his wall. It's still there today.

The hard thing about transitioning to 1/2 day of school is that we've lost our in-home therapy sessions. It was at these sessions where we worked with a therapist on implementing Cole's behavioral plan, among many other things. Once a week we were given a lot of instruction, advise and help. Cole took it very seriously and now we don't have that anymore. Little things like cutting his toe nails, following through on stand up sit downs, wearing long sleeve shirts and doing academic work at home are all suffering.

We've seen an increase in Cole's aggression, non-compliance and silliness. We're trying hard to stay on plan, but it can be very difficult at times. He's getting so big (97 lbs) and strong (he can pick me up and carry me down the hallway). The change of seasons and even one day off from his typical routine can de-rail Cole for days. When you add this to the chaos of the holidays, it can be a disaster. As was Christmas Eve....

Christmas Eve was a valley for us this year. The day started out ok, but given the fact that we had absolutely no snow and Cole went through his list of normal home activities, his patience worn thin quickly. He was uptight all day, bossing us around, getting upset at the simplest thing and he was aggressive to all of us, including himself. Couple that with Pat and I trying to get ourselves ready, prepare food, pack up what seemed like 1/2 the house get out the door on time.

Pat left early with Cole and took him to get a treat at the gas station. The plan was for Connor and I to meet them at his parents (we take two cars so we have an "escape route" for when Cole needs to leave early). Pat got within 1/2 mile of his parents and Cole insisted on driving 20 minutes back home so we could all ride together. He was screaming in the car, kicking the seats and hitting himself. So Pat called me and turned the car around. We packed up the car, with Cole upset and controlling who drove and where we all sat in the car. We got to Pat's parents and Cole seemed pretty happy. He greeted everyone and we enjoyed some time before the chaos began. Once everyone arrived (there are 6 boys between the ages of 10 and 5), it got a little loud and hectic. As to be expected with six excited little boys and the adults prepping food and socializing. It's difficult to explain how and why, but Cole almost instantly got uptight and very short-tempered. He yelled a lot, threw things, made tons of demands and was very non-compliant. Pat and I literally took turns staying within a foot or two from him at all times. That meant virtually no adult conversations, missing the adult gift opening and laying on the floor with him in a back room of their basement.

All the while Connor is just settling into playing with his cousins and the new toys they received. They were excited and at times behaving as boy cousins do, there was some fighting and heightened voices, etc. This really upsets Cole. He wants Connor to play with him and when the cousins all get together, unfortunately Cole often gets left behind. And when voices get loud and kids act the way kids do, he gets even more upset. And so do we. It's hard not to and it's certainly not anyone's fault, but we are human and we too, have a breaking point.

So after trying hard to stay as long as we could, we quickly had to pack up our things, say quick goodbyes and head out. We tried to have Connor, Pat/Connor or me/Connor stay and get a ride home, but Cole threw a HUGE fit in the car at each suggestion. And I mean HUGE. You wouldn't believe it if you saw it. He was literally beside himself. So off we went, all upset, sad and disappointed. After Cole calmed down, the ride home was very quiet. I have to admit I was shedding some tears. Feeling sorry for myself or not, this just isn't fair. It's not the holidays I want for myself, my husband or my kids. And I'm not sure we'll ever find a solution.

As we were pulling into our development, Connor said to Cole in the sweetest voice ever, "Cole, you've done such a great job on the way home, I bet Santa will bring you a lot of presents." Then he asked me, "Mom, did I say the right thing to Cole?" Now if I wasn't crying already, this made it worse. How is it that we are blessed with a little boy who, after being hastily torn away from Christmas Eve with his family, is thinking more about his brother than himself or what just happened. I could only shake my head yes after he asked me twice. I was crying too hard to speak.

Christmas morning went pretty well. Santa brought lots of wonderful presents for the boys and Cole was really excited to play with his new toys. We made a nice breakfast and hung out for a while. But then again, Cole had gone through his list of things to do and was bored and full of anxiety about when people would be coming to our house (and we had 4+ hours to go!). So again he was very short-tempered, mad, mean and non-compliant. Again we had to take turns staying within a few feet of him while trying to get ready and prep for a house full of guests. At one point, I considered telling our family to go on without us and move it to someone else's house. Yes, it was that tough. But we powered through it and after people started to arrive and Cole's energy tuckered out, he calmed down and behaved quite well. He had a great time opening gifts and loved going ice skating on the pond with his family. He learned to self-regulate and although he didn't sit with us at dinner, we got to enjoy it uninterrupted while he played the Wii downstairs.

A peak happened a few days later when we went to Pinz with Pat's extended family. Again, we were expecting a tough go, so we drove separately. Turns out we didn't need to!! Cole did fantastic. He arrived with Pat's parents and after getting lost, we arrived a short time later. Cole was super excited to bowl with his cousins and talk to the other family members. He got excited at times, but he worked very hard so he could "earn" a game of laser tag. It was nice. Pat got to chat with his family for quite a while and I got to make a few rounds myself. Toward the end, we even stepped away from the bowling lane and let Cole bowl a few times by himself. He had a great time and loved playing laser tag. It was a huge success!! Just look at the cute picture of Cole with all of the 2nd cousins on the Niemczyk side!

Our new year was pretty low-key. We hung out at home with the kids and didn't do anything exciting. Cole was thrilled when we actually got a little bit of snow. He was out in full force, plowing the driveway and street. Then he came in and crashed. I don't think any of us made it to see the ball drop. Sleep is more important when you're oldest wakes up around 6am, firing on all cylinders!

I hope our Christmas experience makes you realize what is truly important about the holidays- sharing QUALITY time with your loved ones. Don't take it for granted if it comes easy to you and at your free will. Unfortunately this isn't in the cards for our family. Maybe one day it will be, but sadly these days are typically the toughest for Cole and us. I honestly would give back every single gift I received if I could have enjoyed the company of my family and had the pleasure to watch my boys play with their toys and cousins.

God Bless and Happy New Year!