Saturday, January 14, 2012
retarted- what it really means
I saw this article posted on a blog and had to share it.
http://phoebeholmes.com/2011/12/23/being-retarded/
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!
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!
Wednesday, September 14, 2011
Cole's school project
Cole had his first EVER homework assignment last night! At school, he decorated an "All About Me" box. He put construction paper, glitter and all sorts of drawings on it. He task was to put things that he likes inside the box so he can show and tell about it at school today.
So we found a small John Deere tractor, put a chocolate chip cookie in a baggie, added in the empty Toy Story 3 DVD case and an empty package of "pink gum". I decided there are so many more things Cole loves that just wouldn't fit inside the box. So I went to google images and our photo library to put together a small collage of just some of the things Cole likes: bonfires, his green razor scooter, Nick Universe, a picture of him tubing and playing at the beach, an iTouch, a picture from a play date with his best friend, Marc, YouTube (a favorite pastime for Cole!), his team hockey photo and pictures of him at the Noble Farm and driving a pontoon boat.
I printed out the collage and Cole saw it. He was SUPER excited and rattled off everything on the page. Pat and I looked at one another, happy and so proud- for SO many reasons.
Most of all, because Cole has so many things he loves in life. He is such a happy fella and knows what makes him happy in life. This didn't come easy for him. It has taken countless hours of ABA therapy and hard work for Cole to learn how to enjoy age-appropriate activities. Just two short years ago, Cole was newly potty trained and still liked to watch Baby Mozart DVDs. Now we are able to reason with him and tell him he's too old for them. He knows that big kids don't wear diapers and they don't watch baby movies. He has learned to play his Nintendo DS and he navigates both the iMac and iTouch with ease. When kids come over to play, he can hang with them and play the Wii or other fun stuff. Up until the last 18 months, we never had kids over the play unless Cole wasn't home. Now THAT is progress.
Progress is not all about Cole learning to read, looking at me in the eye or learning not to make funny sounds at inappropriate times. It's also about him enjoying life and being happy. As his mom, that is what I care about most. I love that every single morning, he asks me to snuggle and "get my neckie". Even thought he's ten, he still lets him shower him with countless kisses and hugs every single day. Cole tells me all throughout the day that he loves me. He tells us he will miss us and always wants to know where Connor is at and when he's going to be home. He loves to have Pat wrestle and tickle him. The sound of his belly laugh is the best.
I love hearing him laugh at YouTube, or now even ask me to come in so he can show me the cool lawn tractor video he found. Just last night he called me in to show me a video. He said, "Watch Mom, they will get the Toro started. It will start soon." The tractor back-fired and Cole laughed and laughed and laughed! I love to see the boys snuggle on our big bed, ask for popcorn and lay together to watch a movie. A movie they BOTH enjoy. I love that Cole wants to help our neighbors mow their lawn- even if at times, he tries to do it when they are enjoying dinner on their deck. He knows their tractor is broken and he has saved them many hours by helping them out. I love that Cole can knows who sings songs on the radio. He hears one note and can tell me who the artist is. If he likes the song, he'll ask me to put it on his iTouch. His favorites come and go but he can always tell us what he wants to hear. And I love that for the first summer EVER, Cole wore shorts all summer long. He finally understands that it's more comfortable to wear shorts when it's warm and sunny. Now we're actually having a challenge to get him back to wearing jeans.... we never thought that would happen!
I could go on and on with things I love about Cole. And I could have added many more things to Cole's "What I Like" list. But there was a time when I couldn't write about all of this progress and I wouldn't have had many things to put on that list. As parents, Pat and I were simply overcome with pride last night as we listened to Cole chat about all of the things he loves, us included.
We are so blessed.
So we found a small John Deere tractor, put a chocolate chip cookie in a baggie, added in the empty Toy Story 3 DVD case and an empty package of "pink gum". I decided there are so many more things Cole loves that just wouldn't fit inside the box. So I went to google images and our photo library to put together a small collage of just some of the things Cole likes: bonfires, his green razor scooter, Nick Universe, a picture of him tubing and playing at the beach, an iTouch, a picture from a play date with his best friend, Marc, YouTube (a favorite pastime for Cole!), his team hockey photo and pictures of him at the Noble Farm and driving a pontoon boat.
I printed out the collage and Cole saw it. He was SUPER excited and rattled off everything on the page. Pat and I looked at one another, happy and so proud- for SO many reasons.
Most of all, because Cole has so many things he loves in life. He is such a happy fella and knows what makes him happy in life. This didn't come easy for him. It has taken countless hours of ABA therapy and hard work for Cole to learn how to enjoy age-appropriate activities. Just two short years ago, Cole was newly potty trained and still liked to watch Baby Mozart DVDs. Now we are able to reason with him and tell him he's too old for them. He knows that big kids don't wear diapers and they don't watch baby movies. He has learned to play his Nintendo DS and he navigates both the iMac and iTouch with ease. When kids come over to play, he can hang with them and play the Wii or other fun stuff. Up until the last 18 months, we never had kids over the play unless Cole wasn't home. Now THAT is progress.
Progress is not all about Cole learning to read, looking at me in the eye or learning not to make funny sounds at inappropriate times. It's also about him enjoying life and being happy. As his mom, that is what I care about most. I love that every single morning, he asks me to snuggle and "get my neckie". Even thought he's ten, he still lets him shower him with countless kisses and hugs every single day. Cole tells me all throughout the day that he loves me. He tells us he will miss us and always wants to know where Connor is at and when he's going to be home. He loves to have Pat wrestle and tickle him. The sound of his belly laugh is the best.
I love hearing him laugh at YouTube, or now even ask me to come in so he can show me the cool lawn tractor video he found. Just last night he called me in to show me a video. He said, "Watch Mom, they will get the Toro started. It will start soon." The tractor back-fired and Cole laughed and laughed and laughed! I love to see the boys snuggle on our big bed, ask for popcorn and lay together to watch a movie. A movie they BOTH enjoy. I love that Cole wants to help our neighbors mow their lawn- even if at times, he tries to do it when they are enjoying dinner on their deck. He knows their tractor is broken and he has saved them many hours by helping them out. I love that Cole can knows who sings songs on the radio. He hears one note and can tell me who the artist is. If he likes the song, he'll ask me to put it on his iTouch. His favorites come and go but he can always tell us what he wants to hear. And I love that for the first summer EVER, Cole wore shorts all summer long. He finally understands that it's more comfortable to wear shorts when it's warm and sunny. Now we're actually having a challenge to get him back to wearing jeans.... we never thought that would happen!
I could go on and on with things I love about Cole. And I could have added many more things to Cole's "What I Like" list. But there was a time when I couldn't write about all of this progress and I wouldn't have had many things to put on that list. As parents, Pat and I were simply overcome with pride last night as we listened to Cole chat about all of the things he loves, us included.
We are so blessed.
Friday, September 2, 2011
a new goal
My mom reminded me last night that it has been 5 months since my last blog post- WHAT... how did that happen? I can summarize it one simple word; LIFE.
I set a goal for myself to update my blog much more frequently. Selfishly, I know it will be a great tool to look back in the years ahead and accurately recall many of the moments along this journey.
A lot can happen in five months...
Cole has continued to make remarkable progress and is spending his last day at full time ABA Therapy today. He will start at the new MAC School on Tuesday. It will be 1/2 day of ABA therapy and 1/2 ABA-taught academics. We toured the school last night and Cole could not be more excited. It's very rewarding to move on to this next phase.
Pat has a new job! Congrats to him on his promotion to VP of Sales and Marketing. He has worked incredibly hard and I couldn't be prouder of him.
Baseball season flew by (Connor's team won the championship!) and now we are weeks into football. Connor's hair is now bright blonde- a sure sign summer is on the way out!
5 months ago I was nearly 30 pounds heavier. Yes, with the help of Weight Watchers, protein shakes, support from family and friends and countless visits to the YMCA, I've shed close to 40 pounds since January! Woot woot!!! Now my goal is to maintain, which is 10x harder than losing the weight. When you're trying to lose, you have the motivation of seeing the scale go down. Now I need the scale to say where it is. Wish me luck!
We've had a really great summer. We packed A LOT into those 10-12 weeks. Here are the highlights:
JUNE
Cole went to Camp Dodge. It was a camp for Autistic children that was held at a nature center/farm. He loved it and made a lot of new friends. He continued his full-time ABA throughout the summer and particularly enjoyed water days! We also met his best friend, Marc (a friend from MAC), at Como Town for a play date. It went really well and now we meet once a month.
Connor spent a lot of time playing baseball. Pat coached his team this year and they had a lot of fun. He also moved up a level in gymnastics and practiced 3 days a week, all summer long! He and I spent a lot of afternoons at Bunker Beach where we often met up with family and friends. Oh how we love that place!
As a family, we went down to the Noble Family Farm in Austin, MN. It was so much fun! We rode dune buggies, the 4-wheeler, moved the lawn and rode the big tractor. The kids all played in the sprinkler and also spent time swimming at the hotel pool. Cole loved going up and down on the elevators in the hotel! We are fortunate to be going back tomorrow for another memorable stay.
Sadly, on June 28th I lost my Grandma. She was 98 years old. It happened very quickly and although she was ready to go, we weren't ready to let her. I'm so thankful we were all there to say goodbye, hold her hand, give her kisses and be with her as she passed away. She was an incredible woman and the boys miss her terribly. Cole knows that GG is living above the clouds and he wants to go see her. I keep telling him he needs to wait for a really long time before that happens.
JULY
We started out the month with both the Schusted and Cooney extended families heading up for a week at Cabin O Pines (COP). COP is the resort in Orr, MN which is owned by my sister-in-law's family. It's our second time up there and we all love it! It was really nice to have the Schusted's up there as well. We had remarkable weather and spent a lot of quality time at the beach, boating, fishing, playing yard games, going on scooter rides, biking, hiking and enjoying each other's company. Cole was there from Sat - Wed. He was really excited for the 4th of July fireworks on the lake and he loved having all of his cousins there to share in the fun! We can't wait to go back again next year.
Connor's baseball team played in the Tier II tournament. After only winning two games all year, they came together in the end (in that horrid 100 degree heat), to win the championship game! It was really exciting. Although I think the kids loved the water balloon fight and pizza party just as much as winning that last game.
Cole also closed out his baseball season. He played in the Miracle League again this year. It was great to see the progress he made from last summer. He really started hitting the ball hard. He thought it was hilarious to run to the base and purposefully fall as he approached the base. What a goofball! He also loved spending time on the boat and swimming in Coon Lake. He loved to tube behind the boat and tells Pat and I we are "too old" to tube! ;-)
AUGUST
After a week of football camp, Connor headed up north with his cousin Max, to go to their first overnight camp. The boys spent 3 nights/4 days at Trout Lake Camp. It was amazing! They had a great time and can't wait to go back next summer. When I asked him what his favorite thing was about camp, he had one word: EVERYTHING!!!!!
The boys went to Target Field with Grandpa Denny and I. Neighbor friends of ours graciously gave us free seats right behind home plate. Connor and I went to the game right away and Grandpa and Cole showed up an hour later. It was really hot, but we had a lot of fun. Cole loves to ride the elevators. And after being there only one time before, he knew exactly where to go to find every one!
Pat and I had our 20 year High School Reunion in August. It's hard to believe 20 years have flown by. It's nice to have gone to the same high school. We have a ton of mutual friends and had a great catching up with them. It's incredible to reflect on how much our lives have changed since graduation... isn't it interesting where life takes you!
The highlight of the month was hands down my brother, Brendan's wedding. He married his wonderful wife, Brittany on August 27th. Everything about the day was perfect. Cole's in-home therapist and I did a lot to prepare Cole for the "dance party" portion of the wedding. We had him practice wearing his dress clothes and showed him several picture stories about what would happen that night. We knew the wedding would be too much for Cole, but we made plans for a PCA to bring him to the "dance party" and then back to the respite house. Like I said, it went perfectly.
The wedding was amazing. I had the once-in-a-lifetime honor of officiating the ceremony. It was one of the best experiences of my life and I'm so thankful for the opportunity to marry off my younger brother to such an incredible woman. Cole showed up around 8pm. He had just enough time to make an ice cream sundae, take family pictures, say hello to everyone and check out the mansion. After that, it was time to watch the first dance and mother/father dances. Cole waited so patiently. Finally it was time to party. He walked right up to his cousin Elle, took her arm and brought her to the dance floor. The kids all had a ton of fun doing breakdance moves, handstands and even some gymnastics. Cole danced with Brittany. He held her hands as they danced but kept his eyes closed- not sure what that was about but it was super cute! When another slow song came on, Cole snuggled up to me and we shared a slow dance. It was the BEST. Shortly after that, Cole said he was ready to go. Pat walked he and his PCA out to the car, where we had a few presents for Cole. He did such a great job that we had to reward him!!
The entire wedding weekend was so memorable and fun. Brendan married a truly amazing woman and she has a wonderful family. I couldn't be happier for the two of them!
SCHOOL
Cole is about to start SCHOOL!!!! He hasn't officially been in school for almost 3 years. He has been in full-time ABA therapy since January 2009. It is bittersweet for him to move on from MAC and full time ABA, but he is ready!!!! We are incredibly thankful to all of the amazing therapists as MAC, who worked so hard with Cole. They have done things with Cole I didn't know would be possible. In his last ITP (therapy plan), he had 17 PAGES off mastered objectives. That is incredible!!!! We will especially miss his lead therapist, Jen, who has worked with Cole from day 1. She has spent one day a week in our home for years and is responsible for teaching us behavior and discipline techniques which literally saved our family. When Cole started at MAC, Cole's aggression was so severe that Pat and I weren't sure how long we would be able to keep him in our home. Now the tantrums and aggressive outbursts are under control and only happen a few times a month. Jen treated Cole like he was her own. She was often moved to tears during our therapy sessions and told me she often wakes up during the night, thinking of new ways to challenge and help Cole. I'm not sure why or how we were so blessed to have her in our lives, but we will never forget or under-appreicate everything she has done for our family and son.
Last night we got to visit the MAC School for the first time. It exceeded my expectations more than I could have hoped for. The facility is beautiful. It's nestled among trees, plants and tons of flowers. The play area is all fenced in and there are three different play sets. Inside the school is beautiful. It's immaculate and painted in all kinds of vivid colors. There is a cafeteria, a gym, music room, library, OT/Speech rooms, Computer rooms and a WII ROOM! Cole impressed everything with his razor scooter skills at open house last night. He also remembered several of the kids from when he was at MAC Minnetonka. He went right up to them and started conversations. At one point, he held hands with Marc and led him out to the playground. This is where he needs to be.
In Cole's 5th grade classroom, there are 7 children, including his best friend, Marc. There are two "teachers" in the room. One is a special ed teacher and the other is a lead ABA Therapist. Cole will spend the first half of his day with the special ed teacher, focusing on academics. While he's there, supporting ABA therapists will be by his side (in place of a para). After lunch and recess, Cole will spend the afternoon doing one-on-one ABA therapy (like he's been doing for the past 3 yrs). Cole will only have 2 other kids with him during the academic and ABA time. That is a pretty amazing teacher to student ratio! They have two huge classrooms to use and areas for individual instruction if it's necessary. The classrooms have huge windows, so there is a ton of natural light.
Cole will start school on Tuesday. We are SO proud of him. He has worked incredibly hard for the past 7 years to get to this point. I'm thrilled for Cole. He will be in an environment where he will be completely accepted for who he is, he will receive individualized educational instruction and make friends who aren't going to care if Cole is more interested in knowing what kind of tractor they have vs what sports they play.
I'LL BE BACK
Thanks for reading this monster of an update. I promise I'll be back more often.
Enjoy what's left of summer!
I set a goal for myself to update my blog much more frequently. Selfishly, I know it will be a great tool to look back in the years ahead and accurately recall many of the moments along this journey.
A lot can happen in five months...
Cole has continued to make remarkable progress and is spending his last day at full time ABA Therapy today. He will start at the new MAC School on Tuesday. It will be 1/2 day of ABA therapy and 1/2 ABA-taught academics. We toured the school last night and Cole could not be more excited. It's very rewarding to move on to this next phase.
Pat has a new job! Congrats to him on his promotion to VP of Sales and Marketing. He has worked incredibly hard and I couldn't be prouder of him.
Baseball season flew by (Connor's team won the championship!) and now we are weeks into football. Connor's hair is now bright blonde- a sure sign summer is on the way out!
5 months ago I was nearly 30 pounds heavier. Yes, with the help of Weight Watchers, protein shakes, support from family and friends and countless visits to the YMCA, I've shed close to 40 pounds since January! Woot woot!!! Now my goal is to maintain, which is 10x harder than losing the weight. When you're trying to lose, you have the motivation of seeing the scale go down. Now I need the scale to say where it is. Wish me luck!
We've had a really great summer. We packed A LOT into those 10-12 weeks. Here are the highlights:
JUNE
Cole went to Camp Dodge. It was a camp for Autistic children that was held at a nature center/farm. He loved it and made a lot of new friends. He continued his full-time ABA throughout the summer and particularly enjoyed water days! We also met his best friend, Marc (a friend from MAC), at Como Town for a play date. It went really well and now we meet once a month.
Connor spent a lot of time playing baseball. Pat coached his team this year and they had a lot of fun. He also moved up a level in gymnastics and practiced 3 days a week, all summer long! He and I spent a lot of afternoons at Bunker Beach where we often met up with family and friends. Oh how we love that place!
As a family, we went down to the Noble Family Farm in Austin, MN. It was so much fun! We rode dune buggies, the 4-wheeler, moved the lawn and rode the big tractor. The kids all played in the sprinkler and also spent time swimming at the hotel pool. Cole loved going up and down on the elevators in the hotel! We are fortunate to be going back tomorrow for another memorable stay.
Sadly, on June 28th I lost my Grandma. She was 98 years old. It happened very quickly and although she was ready to go, we weren't ready to let her. I'm so thankful we were all there to say goodbye, hold her hand, give her kisses and be with her as she passed away. She was an incredible woman and the boys miss her terribly. Cole knows that GG is living above the clouds and he wants to go see her. I keep telling him he needs to wait for a really long time before that happens.
JULY
We started out the month with both the Schusted and Cooney extended families heading up for a week at Cabin O Pines (COP). COP is the resort in Orr, MN which is owned by my sister-in-law's family. It's our second time up there and we all love it! It was really nice to have the Schusted's up there as well. We had remarkable weather and spent a lot of quality time at the beach, boating, fishing, playing yard games, going on scooter rides, biking, hiking and enjoying each other's company. Cole was there from Sat - Wed. He was really excited for the 4th of July fireworks on the lake and he loved having all of his cousins there to share in the fun! We can't wait to go back again next year.
Connor's baseball team played in the Tier II tournament. After only winning two games all year, they came together in the end (in that horrid 100 degree heat), to win the championship game! It was really exciting. Although I think the kids loved the water balloon fight and pizza party just as much as winning that last game.
Cole also closed out his baseball season. He played in the Miracle League again this year. It was great to see the progress he made from last summer. He really started hitting the ball hard. He thought it was hilarious to run to the base and purposefully fall as he approached the base. What a goofball! He also loved spending time on the boat and swimming in Coon Lake. He loved to tube behind the boat and tells Pat and I we are "too old" to tube! ;-)
AUGUST
After a week of football camp, Connor headed up north with his cousin Max, to go to their first overnight camp. The boys spent 3 nights/4 days at Trout Lake Camp. It was amazing! They had a great time and can't wait to go back next summer. When I asked him what his favorite thing was about camp, he had one word: EVERYTHING!!!!!
The boys went to Target Field with Grandpa Denny and I. Neighbor friends of ours graciously gave us free seats right behind home plate. Connor and I went to the game right away and Grandpa and Cole showed up an hour later. It was really hot, but we had a lot of fun. Cole loves to ride the elevators. And after being there only one time before, he knew exactly where to go to find every one!
Pat and I had our 20 year High School Reunion in August. It's hard to believe 20 years have flown by. It's nice to have gone to the same high school. We have a ton of mutual friends and had a great catching up with them. It's incredible to reflect on how much our lives have changed since graduation... isn't it interesting where life takes you!
The highlight of the month was hands down my brother, Brendan's wedding. He married his wonderful wife, Brittany on August 27th. Everything about the day was perfect. Cole's in-home therapist and I did a lot to prepare Cole for the "dance party" portion of the wedding. We had him practice wearing his dress clothes and showed him several picture stories about what would happen that night. We knew the wedding would be too much for Cole, but we made plans for a PCA to bring him to the "dance party" and then back to the respite house. Like I said, it went perfectly.
The wedding was amazing. I had the once-in-a-lifetime honor of officiating the ceremony. It was one of the best experiences of my life and I'm so thankful for the opportunity to marry off my younger brother to such an incredible woman. Cole showed up around 8pm. He had just enough time to make an ice cream sundae, take family pictures, say hello to everyone and check out the mansion. After that, it was time to watch the first dance and mother/father dances. Cole waited so patiently. Finally it was time to party. He walked right up to his cousin Elle, took her arm and brought her to the dance floor. The kids all had a ton of fun doing breakdance moves, handstands and even some gymnastics. Cole danced with Brittany. He held her hands as they danced but kept his eyes closed- not sure what that was about but it was super cute! When another slow song came on, Cole snuggled up to me and we shared a slow dance. It was the BEST. Shortly after that, Cole said he was ready to go. Pat walked he and his PCA out to the car, where we had a few presents for Cole. He did such a great job that we had to reward him!!
The entire wedding weekend was so memorable and fun. Brendan married a truly amazing woman and she has a wonderful family. I couldn't be happier for the two of them!
SCHOOL
Cole is about to start SCHOOL!!!! He hasn't officially been in school for almost 3 years. He has been in full-time ABA therapy since January 2009. It is bittersweet for him to move on from MAC and full time ABA, but he is ready!!!! We are incredibly thankful to all of the amazing therapists as MAC, who worked so hard with Cole. They have done things with Cole I didn't know would be possible. In his last ITP (therapy plan), he had 17 PAGES off mastered objectives. That is incredible!!!! We will especially miss his lead therapist, Jen, who has worked with Cole from day 1. She has spent one day a week in our home for years and is responsible for teaching us behavior and discipline techniques which literally saved our family. When Cole started at MAC, Cole's aggression was so severe that Pat and I weren't sure how long we would be able to keep him in our home. Now the tantrums and aggressive outbursts are under control and only happen a few times a month. Jen treated Cole like he was her own. She was often moved to tears during our therapy sessions and told me she often wakes up during the night, thinking of new ways to challenge and help Cole. I'm not sure why or how we were so blessed to have her in our lives, but we will never forget or under-appreicate everything she has done for our family and son.
Last night we got to visit the MAC School for the first time. It exceeded my expectations more than I could have hoped for. The facility is beautiful. It's nestled among trees, plants and tons of flowers. The play area is all fenced in and there are three different play sets. Inside the school is beautiful. It's immaculate and painted in all kinds of vivid colors. There is a cafeteria, a gym, music room, library, OT/Speech rooms, Computer rooms and a WII ROOM! Cole impressed everything with his razor scooter skills at open house last night. He also remembered several of the kids from when he was at MAC Minnetonka. He went right up to them and started conversations. At one point, he held hands with Marc and led him out to the playground. This is where he needs to be.
In Cole's 5th grade classroom, there are 7 children, including his best friend, Marc. There are two "teachers" in the room. One is a special ed teacher and the other is a lead ABA Therapist. Cole will spend the first half of his day with the special ed teacher, focusing on academics. While he's there, supporting ABA therapists will be by his side (in place of a para). After lunch and recess, Cole will spend the afternoon doing one-on-one ABA therapy (like he's been doing for the past 3 yrs). Cole will only have 2 other kids with him during the academic and ABA time. That is a pretty amazing teacher to student ratio! They have two huge classrooms to use and areas for individual instruction if it's necessary. The classrooms have huge windows, so there is a ton of natural light.
Cole will start school on Tuesday. We are SO proud of him. He has worked incredibly hard for the past 7 years to get to this point. I'm thrilled for Cole. He will be in an environment where he will be completely accepted for who he is, he will receive individualized educational instruction and make friends who aren't going to care if Cole is more interested in knowing what kind of tractor they have vs what sports they play.
I'LL BE BACK
Thanks for reading this monster of an update. I promise I'll be back more often.
Enjoy what's left of summer!
Wednesday, March 30, 2011
So what should I say?
I read the following Facebook status update recently from another Autism mom I know via FB.
"I dislike when people tell me I have a special needs child b/c God knew I could handle it. BS...I don't have a special needs mom gene that makes this easier for me than it would be for the average person. That is just what people say to make themselves sleep better at night. I am just as selfish as the next person. I wish I had been given a special gene...it would make it much easier. I am the same as you."
I couldn't help but read some of the responses to her posting. One of which was, "not being antagonistic at all-just really curious. What is the right thing to say?"
It got me thinking, what IS the right thing to say and what do I think of her posting?????
Certainly I've had many people say things to me like, "God doesn't give you more than you can handle. There is NO WAY I could do what you do. There is a reason why God gave Cole to you., etc." For the most part I agree, God doesn't give you more than you can handle. Somehow, even on the roughest of rough days Pat and I manage to make it through. Dealing with Cole when he is struggling is incredibly difficult. Even our families are surprised at his behavior at times. And yes, there are times when I hear another parent say, "Oh, so and so had such a tantrum last night. It was awful." and I want to ask, "well, has so and so ever broken a window in your home, has she put her head through the sheetrock or punched you so hard it takes your breath away? Has your child slapped you so hard that your arm stings for the rest of the night and bruises the next day? Has he ever had to be carried out kicking and screaming from a hockey arena after throwing water bottles at the crowd, punching, scratching, hitting you and then slamming his head off concrete? Oh and don't forget the popped blood vessels in his face from screaming so intensely." Now THAT'S a tantrum. And yes, it's coming from a ten year old boy who has a disability you can't see. Imagine the looks you get from people.
Autism is very humbling. But that's ok. I've gotten to the point where I can let the public tantrums, the nasty looks and comments roll off my back. I know I'm a great mom and Pat is an AMAZING dad to Cole. We are doing a fantastic job with our son and he is working incredibly hard to cope with the numerous struggles that come with his disability. And the people I love and care about most know that, too. I'm not worried about the lady who gave me a dirty look last night at Jam Hops when Cole continued to kick the indoor fence after I asked him not to several times. I am not a bad mom who does not discipline her children. In fact, I'm damn good at being a mom. I know that, my husband knows that and so do our families and friends. At the end of the day, those are the people I care about. They see how deeply we love our son, they know the mountains we have climbed, the hoops we've jumped through and the daily struggles we overcome. My energy is better served focusing on my family verses worrying about what some person at the gas station thinks.
As I said above, many people have said, "I don't know how you do it. I couldn't." YES YOU COULD and you WOULD. It all boils down to one absolutely wonderful thing: unconditional love. I love Cole with every single cell in my body. It is this overwhelmingly powerful unconditional love for Cole that motivates Pat and I to make his life the very best it can be. It's that simple. We are not special people and we are not any better equipped to handle our situation that anyone else.
SO WHAT IS THE RIGHT THING TO SAY?
That is a tough one. For me, it's not what you say but how much you cherish all of the little things. I see so many people who take the little things for granted: being able to take their children to another siblings hockey game, deciding last minute to go hiking in the woods, eating dinner together as a family, being able to change plans last minute and have your kids go with the flow, not seeing one of your kids in tears at family gatherings because the other child can't handle being there anymore, sometimes spending holidays alone because one of your children refuses to go at all, not having to play outside for 45 minutes in 8 degree weather because your child doesn't feel heat/cold the same way you do, having a home that will need $10K+ in repairs before you could possibly sell it, etc., etc. etc.
For me, I want to know that you aren't taking your life for granted. I want you to know that taking your dog for a walk while your 11 and 9 year olds stay at home for 15 minutes is a privilege. Having the flexibility to go where you want to go, when you want go- even if it is running errands and going to 2 soccer games and a dance practice, is a privilege. Having a child that can function in a neuro-typical classroom and play regular sports/activities is a privilege. Watching your children learn and helping them with homework is a privilege. The ability to reason with and discipline your children is a privilege.
Maybe a good response is something like, "You are doing a great job with your child. Kids sure have a way of making us cherish what really matters in life."
ENOUGH OF THE SOAP BOX, what have we been up to?
We are thrilled to see spring peeking around the corner. The sun has been out for the past several days and it feels great. I think we all have a little more pep to our steps these days. Pat and I just got back from vacation in warm, delightfully sunny Ixtapa, Mexico. We are so very fortunate to have wonderful family who help out with the boys while we take time for ourselves. This year, my parents and older brother, Sean, also were in Ixtapa. We overlapped by three days and got to spend some time together. The guys went deep sea fishing and had a great time catching lots of fish. We had some really fantastic meals together and loved watching the sunsets from their window-filled condo. Pat and I thoroughly enjoyed our time together and appreciate everyone who helped with the boys so we could indulge in some major relaxation!
Cole had a great time turning 10!!! He loves to tell you how old he was in each year. He'll say, "Mom, how old I was in 2005? I was 4!!!". Language might not be perfect, but he's trying hard and selfishly I see that as him figuring out simple math. :-) We celebrated with a bowling party at Ham Lake Lanes. Cole loved bowling with his cousins and family. He also had a great time singing karaoke. He walked around with the mic and everyone got a chuckle when (as he was ready to go), he announced to everyone in the bowling ally, "This is Cole. The party is over. Bowling is closed. It's time to go." Did I mention we love his sense of humor???Although in his eyes, he wasn't trying to be funny. He was a man on a mission, after all, it was time to go home.
The highlight of Cole's winter was him getting to ride on the zamboni during the U of M Women's hockey game!! For those who don't know, Cole is obsessed with zambonies. A friend from high school arranged for him to ride the zamboni between periods. He was thrilled. He waved to his family in the crowd and got excited when they announced his name on the loud speaker. He even wore his U o M jersey! Check out the video below.
Connor had an exciting winter! He is turning into a fine gymnast. We were excited to travel to Iowa City in February for his first out-of-state meet. It was so much fun! Two weeks ago, Connor and his team competed in the MN State Gymnastics Championship. His team took 1st place and Connor was the top overall gymnast for all kids at his level!! Connor has developed into a real leader on his team who, even after being at home with Influenza for a week, said, "Mom I really want to try to compete. I'm not trying to brag or hurt feelings, but I usually score high and my team needs me." Needless to say, his team took 2nd that day and Connor again placed 1st in his age group! Connor also had a great time in hockey this year. His skating and stick-handling really improved and he scored a fair amount of goals throughout the season. Now we're moving on to baseball season. Pat is coaching him this year and Connor is excited to have a lot of his close friends on the team.
We are so proud of Connor. He continues to be an empathetic, proud and loving brother to Cole. They have a ton of fun together and both have already been out riding their scooters and bikes! Connor loves school. He has a lot of friends and likes to talk to everyone. He's a great a speller, he's only missed 1-2 words the entire year!! He excels in reading and math and loves science, too. He's a huge snuggle-bug, just like his brother. And he's pumped that his bangs have finally grown out after he gave himself a haircut back in October!!
Thank you for taking the time to read my blog. I hope it gives you a snapshot as to what life is like when someone you love has Autism. And I hope it makes you cherish all of the little things in life and the freedoms and flexibility that come along with it.
Thursday, January 20, 2011
Can 2+ months really fly by this fast?
Apparently yes, two months CAN fly by this fast! I knew I was a little behind on my blog, but I was blown away to see my last post was pre-Halloween! Maybe that's a good sign... winter is nearly half over already.
But first let me back up a bit. Cole had a fantastic Halloween. He was thrilled to be Luigi from Super Mario. He wore that costume with so much pride and was even more thrilled when he saw a neighbor boy who was dressed as Mario! Cole got lots of practice wearing his costume. MAC had a Halloween party and he also wore it plenty around the house. Cole just couldn't get enough of himself, he was constantly checking himself out in the mirror. This was the first year Cole picked out his costume and wore it without hesitation. He did awesome while trick-or-treating. We pulled a trailer behind our 4-wheeler and had several of the neighborhood kids and family on it with us. Cole knew exactly what to do and loved running to the houses with his brother and friends.
November is always a time to reflect on our blessings. We got some great news from one of Cole's therapists. His Occupational Therapist informed us that starting in January, Cole would no longer need OT services! This is great news. It means Cole has mastered nearly every objective in his therapy plan. The only things left are tying his shoes and clipping his toe nails; two things that are extremely difficult for him. I think back to where he started years ago and there are so many things he's accomplished: tooth brushing, buckling, zipping, snapping, holding a pencil, typing, clipping his finger nails and so much more. We also had a very positive and encouraging meeting at MAC for Cole's 90 day plan update. He continues to blow through his objectives and challenge the therapists to pave a different road for his therapy. It's so rewarding to look over the report which shows pages and pages of mastered objectives. And I love how dedicated the MAC therapists are at researching, brainstorming and challenging themselves to come up with countless ways to challenge Cole and increase his skills. We are blessed.
December came and went in a flash. The boys loved all of the snow we got and had a blast playing outside. Cole was especially thrilled when Pat brought home a new snowmobile (new to us at least). I got part of Cole's reaction on video, but not all of it. He was over the moon and his grin went from ear to ear. Cole loves anything that goes fast and snowmobiles are no exception. Pat and the boys have had hours of fun riding the trails that are only a mile from our house. Pat's also taken them up to the ice fishing shack on Coon Lake. The highlight from that trip was when Pat got pulled over by the Sheriff. Pat didn't have all of the proper stickers on his snowmobile and got a warning ticket. Cole said to the guy, "Give him a ticket. We want a ticket!". He also asked to sit in his police car and go for a ride. Good times.
Christmas was very nice. Cole did exceptionally well at Pat's parent's house on Christmas Eve. He loved sledding outside with his cousins and showed so much patience and good manners when opening presents. Cole had fun when we hosted Christmas day at our house. He loved brunch and opening more presents. It was so exciting for him- everyone went in together and got him a refurbished iTouch! We got him a custom skin for the outside that is John Deere colors and has a picture of Cole on a tractor. He loves his iTouch. He takes it with him on the transportation van every day. Cole can listen to his favorite music (Leona Lewis, Kelly Clarkson, John Mellencamp and holiday tunes), and watch his favorite movies (Toy Story, Monsters Inc and Finding Nemo). He's done very well following the laminated directions on his backpack that remind him to put his iTouch in it's case after every car ride. Never did I imagine we could give him this responsibility! Although we have staff, drivers and us parents who make sure it's in the case before the van leaves.
Pat and I got to do something exciting. We got to travel to Dallas for a quick weekend trip. Pat's company has an office down there and we were fortunate to be invited to their holiday party. It was a lot of fun and really nice to breathe 60 degree air and soak in the sunshine. We spent some quality time with one of the other owners, ate at a true Texas BBQ and had fun shopping at a huge mall. We both loved the city and left wanting to go back again soon!
Cole had a few extra days off over the holidays. As good as he did on the actual holidays themselves, there were a few really tough days as well. Cole gets extremely thrown off when even the littlest thing changes in his routine. He acts out by being defiant, aggressive and non-compliant. It can make those extra days at home unbearable at times. The good thing is that now we know what to expect and we mentally prepare for these tough times.
January has been going well for us. Cole loved having his cousins Brady and Elle sleepover. Brady was first. Typically Brady will stay in Connor's room. On this particular night, Cole insisted Brady stay in his room. It's only fair, I suppose. It was really cute. Cole wanted Connor to sleep in his (Cole's) bed and Cole made a "sleeping bed" on the floor for him and Brady. He layered piles on blankets and placed two pillows at the top. Cole told Brady, "Cole's never slept in a sleeping bed. Lets catch some zzzz's." and when Pat told Cole he couldn't snuggle Brady, Cole turned to Brady and said, "Don't worry Brady, I won't bother you". Needless to say, when we checked on the boys ten minutes later, they were all sound asleep. The same thing happened the following night with cousin Elle. It's so nice to have Cole take part in activities that we used to only do when he was not around. :-)
Cole had the stomach flu twice in the past six weeks. The first time, it happened on the night of Pat's company holiday party. He was pretty sick that day and I ended up staying home while Pat went to the party. The second time was just yesterday. Cole threw up a few times in the morning, but then started firing on all cylinders. It was like any other day. Cole was so proud to tell Pat, ""Daddy, I threw up in the bucket all by myself!!!!" And when he asked me for muffins, I told him he couldn't and that his tummy might not like it. Cole then pointed to his belly and said, "Tummy, you want muffins???" I love how literal he can be at times.
I can't stop writing without some news about Connor. He's such a fantastic kid. He really is. Connor loves school, excels at it and has tons of friends. He still runs to me with a huge hug when I come in to visit him at lunch or volunteer in his class. He adores his teacher and loves to share what he's learning about. He's full of interesting facts, just like his dad. This winter, Connor is playing hockey and still competes in gymnastics. He had his first meet a few weeks ago. We knew Connor could hold his own, but he ended up placing in all six events and he took first place in the all-around, amongst 68 other gymnasts! We had so much fun staying in a hotel with his team and competing the next day. We are looking forward to traveling to Iowa in February for an out-of-state meet! Connor also has taken a liking to snowboarding. He's had a few lessons with Brittany's brother, Ross. Lucky for him, there are eight foot tall snow banks in our yard for him to practice on. At the last lesson, I was chatting with Ross and looked up to see my 7 year old riding on the chair lift by himself. That's our Connor.
Connor continues to be an incredible brother to Cole. I always tell him that God placed him in our family for a reason and there is no one who could be a better son and brother than he is. Connor is so proud of Cole and likes to involve him in his play dates. They love to play the Wii together, wrestle, color and play outside. It's wonderful to watch.
Thursday, October 28, 2010
Cool stuff going on
Cole has been slowly adjusting to the cooler weather and diminishing daylight. Not that he's fond of these changes, but he seems to be coping as best he can. Fall and Spring are the two most difficult times of the year for Cole. He struggles in the fall to let go of all the wonderful things that summer brings: endless tractor rides, short sleeve shirts, playing outside until 8pm, bike rides, scooter rides and other fun things.
It takes quite a few weeks for Cole to adjust to playing inside longer, putting on a coat and waking up when it's still dark out. The last few mornings, Cole has told me, "Mom go back to bed, it's still dark out". Now only if he said that on the weekends, when he's consistently up and firing on all cylinders at 5:45am. These transitions seem easy and for some people, even anticipated. For Cole, these changes throw him off entirely. It affects his behavior. He's on edge, irritable and doesn't understand when you tell him he can't ride his scooter in the dark. His therapists at MAC work on getting him to wear more than one pair of jeans and long sleeve shirts. Cole is so resistant to these things that he checks his backpack each morning and tells me, "no jeans or long sleeve shirts in backpack Mom." I have to hide them inside when he's not looking or sometimes hand a separate bag to his driver, so she can give it to MAC.
The other hard thing is the first few snowfalls. You know, the kind where it is snowing, but it melts when it hits the ground. That is the worst for Cole. He thinks he's going to get to plow snow with the tractor or at very least, shovel. He's ready to put on his snow suit, put the plow on the tractor and spend two hours moving the snow around. He doesn't understand that the ground is too warm.
Thankfully, over the past 18 months, Cole has learned a lot more age-appropriate play skills. This helps tremendously in the cold weather months. He loves playing the Wii, his Nintendo DS and more recently, he loves my iPhone and the music it can play. Cole has his own special play list. He jams to music of all kinds. Right now he's into Katy Perry, John Mellencamp, Pink and the Gear Daddies. He navigates my phone with ease, puts on his headphones, sings, bops his head and shakes his hands to the beat. He loves music, just like his brother does. Cole will even look up the music videos or concerts on YouTube. He can point out John Mellencamp from other members of the band and find him singing the songs he likes.
Cole continues to take private swim lessons at Foss. He is making so much progress. His instructor, Megan, is amazing with Cole. She's been working with him for almost two years and she knows him well. She understands how to motivate him, how to keep him from acting silly and more importantly, how to teach him to swim. We've tried other instructors and not one has been as great as Megan. Cole was thrilled last week when it was Safety Week at Foss. He got to put on a Foss sweatsuit and practice both swimming in the clothes and jumping off the sides. They walked around the read all of the safety signs. They talked about who Cole can swim with, where he can swim and what to do in an emergency. He loved it!
Cole is SO excited to start hockey. We have him signed up for his second season on the Polar team in the MN Special Hockey league. He is waiting patiently for the middle of November, when he'll skate every Sunday. I took the boys to open skate last Saturday. We met Uncle Sean at the arena. They both loved skating with Uncle Sean. Cole's legs were a little wobbly at first, but he got back into it. I even saw him talking to an older gentleman and giving him a high five. Sean and I both saw it and couldn't help but smile. Cole still loves to skate fast and then fall down. The goal this year is to teach him more about where to shoot the puck and not to fall until after he scores a goal. We'll see how that goes! As much as Cole loves to skate, his favorite part is the zambonie. At open skate, he was asking the rink attendant if the zambonie was going to come out. It made his day when the black and gold machine revved up and made its way onto the ice. Cole waved in excitement and told me the "zambonie was mowing the ice." I guess that's one way to look at it!
I have been looking for some homeschool activities that Cole can participate in while he's in therapy at MAC. We all feel it would be a really great opportunity for Cole. Not only will he get to do some fun activities throughout each week, he'll get the chance to socialize with and model after neuro-typical children. So far, we have him signed up for homeschool gym class at the YMCA, ice skate lessons, a monthly rock climbing group and I'm hoping to add either bowling or gymnastics! We are also waiting to see if there is a spot on the roster of a Special Olympics Floor Hockey team. I should find that out this week. I'm so proud that Cole has progressed to a point where these things are possible. What a gift!
Speaking of progress, we just had Cole's annual assessment with MAC. Each year Cole is tested to see where he falls on the Autism Spectrum. It's a big undertaking. I fill out several questionnaires, Cole is observed and tested, I am interviewed, along with several of his therapists. We had a meeting this week to find out the results. Things went so well. Cole showed so much improvement over last year. He is continually moving toward the mildest area on the Autism scale. He still tests and functions in quite low percentages when compared to kids his age, but I don't give a crap. He's making TONS and TONS of progress and his Autism symptoms are slowly decreasing in intensity and severeness... what more can we ask for? He is talking more fluently, teaching himself to read, understanding simple math and having less aggressive behaviors. More importantly, he is happier and enjoying life. His frustration level is decreasing and he has the skills to play with kids his own age.
MAC has been incredible and a critical part of his progress. His team of therapists are truly vested in Cole. His lead therapist came back from maternity leave last week. She told me at the meeting that while on leave, there was a chance she was not going to be re-assigned to Cole upon her return. She was so bummed out, that she immediately called her husband and then her mom to talk about it. She was devastated. Then a week later, she got her case load and Cole's name was on it. She called the office right away to confirm it and when they told her she would indeed still be working with Cole, she was elated. These are the type of people who work so hard on Cole's behalf. They are highly-educated, driven, passionate, caring and wonderful people. And we are so blessed to have them on our team.
I hope you all enjoy a fun Halloween with your families. This is the first year Cole has showed true excitement for Halloween. For the first time ever, he told me what he wanted to be and helped me find the costume. It came in the mail last week and he was so excited. Cole tried it on right away and stood in front of the mirror, looking at himself, dancing in it and asking if he could wear it every day. It seems so simple, but this is significant for Cole. We know how much work and progress it's taken to get Cole to this point and Pat and I could not help but revel in it.
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