Successful play date = 1 proud and happy mom!

As most of you know, Cole spent last Saturday through Wednesday at the respite house. It was his fourth stay there and again it was a huge success. He had so much fun. They took him to all of his favorite spots: Rosedale, Borders, Target, McDonald's and Grand Slam. I laughed when they told me Cole requested to eat at a Chinese place at Rosedale. He ordered Wontons and soup! (even funnier when you consider Chinese is not a delicacy we enjoy at our house). Cole got to play outside a lot; probably more than he would if he were at home. They really do an outstanding job and we are so thankful.

I got to see him at my weekly training session at MAC on Tuesday. I was nervous as to how Cole would react, given he was staying at the respite house. Cole was SO happy to see me. He told me right away, "One more day at respite. Cole will come home on Wednesday!" He snuggled and hugged me a lot. Cole kept rubbing my neck and saying "Hi Mom". Oh how I missed my snuggle buddy. It's a good thing I only had to wait one more day to see him!

Pat, Connor and I took advantage of the respite time, as that is what it is for. We got to enjoy all of the simple things, like going to the YMCA together, dinner out at Beef O Brady's, practicing baseball in the back yard, a birthday party at Cooper's and other fun things. We also had the upstairs of our home painted while Cole was gone. This was a huge under-taking and we knew it was something we had to do while he was gone. Thankfully John, the wonderful painter, worked with our schedule and did an amazing job. 

We were nervous about how Cole would react to a house that didn't look like he did when he left. The paint colors are drastically different from what they were before. When you add that to the new furniture and TV we just got, I just wasn't sure what kind of reaction Cole would give us. Thankfully, he walked in Wednesday and was very excited. He quickly walked around the house and looked in every room. He asked if his room was painted, and wasn't disappointed when we told him no. Cole really seemed to like the paint, especially the chocolate brown wall that he says looks like the color of our neighbor's tractor! The picture of Cole at the computer is him right after he got done checking out his new digs. You can tell from his gigantic smile that he was one happy fella.

We've had a good weekend so far. Tonight was fun. Pat went to hit some golf balls and I stayed home with the boys. We asked two neighborhood boys to play. It went so well. Cole and I rode our bikes on the trails in our yard and spent time together while the other kids played. Soon enough, Cole joined Connor, Matthew and Andrew on our swing set. The kids swung and played a tether ball type game together. They were laughing up a storm. Cole did a great job. He interacted just like any kid would and the boys included him in their play. I was so proud of Cole. He is learning how to play and more importantly, enjoying it! Soon enough, the boys moved on to the trampoline and Cole opted to shovel the dirt. All in all, it was a great play date. The kids even got to chase a wild turkey that walked into our backyard. The kids ran after it and the turkey got a running start and flew away! They thought it was so cool.

Right after the boys left, Cole insisted on putting his bike in the truck. He then wanted Connor's scooter in the truck as well. It was 8pm and time for bath, not the ideal time to drive to a park. Cole had it in his head that he wanted to "go to the park by the orange store and ride my bike". Hummm... just what park was he talking about? And how was I going to do this by myself, at 8pm at night without knowing where he wanted to go? Luckily Pat pulled in the driveway just as I was about to leave. Whew!

After a quick stop to get gas, Cole successful directed us to the park he was talking about. We have taken Cole to this small park that has a nice walking path around a big pond. This was the park he was talking about. I wish you could have seen how happy he was when we arrived and took his bike out of the truck. He was elated!!!!  The boys were off to the races. Pat and I walked quickly, trying to keep up. Soon it became apparent that we needed to run. So off we went, running... me with my purse in hand and Pat in work boots. Cole and Connor would ride and scoot until they were just out of sight and then stop to wait for us. They both did awesome and it gave us an additional work out for the day! I took some great pictures of Pat and the boys at dusk while they were sitting on a bench but they were too blurry to post.

Now the boys are crashed and we are enjoying our newly painted home. It feels great. All of the wall cracks, nail pops and kid dings are fixed. The paint looks great and we are ready to relax. I'm going to finish my post and read the last book in the Twilight series. Enjoy the rest of your weekend everyone! 

** Please say a prayer for my Grandma Irene, who is in the hospital with Bronchitis. She should be just fine, but with the vast number of prayers she says for us, I want to be sure we are doing the same for her. Love you GG.

My brave young man

I hope you have all enjoyed the beautiful weather over the past week. Cole has been in heaven! To say he likes to ride his bike and scooter is an understatement. Each day this past week, he has stepped off the transportation van and ran to the garage for his bike. It has been so pleasant to spend time with Cole outside. He is so much more content and happy. The boys ride their bikes everywhere they can, even on the hill in our backyard. Cole especially likes this because he can go even faster on the hill! We've noticed that Cole exhibits fewer aggressive behaviors when he can play outside. That is a definite plus. Cole is such a good bike rider. He taught himself when he was three and he's been off to the races ever since. 

I had a wonderful family training session with Cole at MAC this week. It was my third session with Cole and his lead therapist. It is amazing how well Cole behaves for me when he is there. I can easily get him to transition from activity to activity. I can also interrupt what he is doing and ask him to modify his task, without resistance. I've been interrupting his play activities and asking him to read books. He resists at first but then cooperates. His reading skills are really improving!!! Cole did a great job at telling me he wanted to go for a walk in the woods while I was there. MAC has beautiful grounds, full of trees and paths. The three of us had a fun time walking around, looking for deer and other animals. I had so much fun and I'm learning a lot about how we need to change things at home. We have no doubt that placing Cole at MAC was the right decision. He is making so much progress and he works so hard when he's there. We could not be any more proud of him. 

One challenge that we have been dealing with is the clothing Cole wants to wear. All winter long, Cole would let me choose his shirts. He didn't seem to care or have a preference for specific clothing items. Not any more. His jeans need to be dark blue Gap jeans, with the slide clasp and without holes worn in the knees. Thank God I purchased several pair while they were on clearance last spring. T-shirts have become quite the issue of concern. Cole is only willing to wear two different shirts. If it were up to him, he would wear his red, "I'm that good" t-shirt every single day... and he tries to! I have to get his shirt wet before he gets up so he thinks I'm washing it. Most mornings, I have to show him six or seven different shirts before he'll finally give in and wear one that he didn't have in mind. And then he'll say "I'll wear the red shirt on Friday". He will sometimes try to sleep in the clothes he wore the night before. We'll get him out of the bath and put him in his PJs. A few minutes later, we'll hear him digging through his clothes bin to put on the red shirt. He's so smart! 

Cole also doesn't like that I cut my long hair. Cole loves mommy's neck. Whenever I was around him, he asked me to put my hair in a rubber band so he could have access to my neck. A few weeks back, I got my hair cut above my shoulders and I no longer can pull it back. This hasn't gone over well with Cole. I've nearly lost my snuggle buddy. He asked me to get my old hair back. Thankfully I've managed to pin my hair back so he thinks it's pulled off my neck. At last, he's willing to snuggle again. It was quite the different reaction compared to Connor who graciously told me, "Mommy, your hair is SOOOO pretty!"

Cole went to the respite house for the fourth time yesterday. His sense of timing absolutely blew us away. Cole had gone to the respite house the past three times on a Wednesday. When he got back from the house in March he said, "Cole is all done at respite in March. Go to respite in April." I told him that next time he would go to the respite house on a Saturday. That was all I said about it, and that was a month ago. 

Fast forward to last Sunday. Cole started talking about the respite house. He said he didn't want to go and he even looked at himself in the mirror and started to cry. "No respite on Saturday. Want to live at this house." We tried to re-direct his attention and not confirm what was going to happen. We could not believe that he knew it was time for respite and that he remembered about going on a Saturday. Throughout the week, Cole had anxiety about going to the house. Saturday came around and the plan was for his PCA, Tiffany, to hang out with Cole for a few hours and then drop him off at the house. I made a picture schedule for Cole which showed what was going to happen each day and when he would come home. 

Cole was so excited to see Tiffany. He didn't want to wait, so I took him to Cub beforehand. I had the picture schedule in my front seat and he saw it. He asked to see it, so I gave it to him. I didn't know how he would react. I was nervous he would see what was going to happen and refuse to go with Tiffany. Instead, he read every part and concentrated really hard. He looked at me and happily said, "Tiffany will say Goodbye Cole!" He then started saying things like "Cole will come home on Wednesday. Kelly from respite will take me to swimming. I'll see Grandpa and Tiffany on Thursday." Cole was perfectly happy and content. I realized he just needed to know what was going to happen. I honestly think he was wondering if we were going to leave him there for good. Cole has had such positive experiences at the house so I should have known he didn't mind going. It was the fact that since he was now arriving on a Saturday, he didn't know when/if he would come home, etc. I should have made the schedule last week. Live and learn Mommy- next time I'll be prepared. Poor Cole... think of how scary that must have been for him. Not knowing what is going to happen and if or when you're coming home again. Here we were trying to avoid the subject and hopefully the anxiety, but instead our avoidance was making Cole's anxiety worse. 

Tiffany called us at 5:01pm last night, one minute after she dropped Cole off. She said Cole walked right up to the house and went inside. He greeted the house staff and said "Goodbye Tiffany!". When I called last night, the staff member said Cole got to dig in the dirt with tractors and watch his favorite Wiggles movie. He was snuggled in his John Deere blanket and pillow, sleeping soundly. 

We love you so much Cole and we miss you already. Enjoy your time at the respite house and thanks for being so brave.

Lots to catch up on....

I want to start out my blog by sharing an experience of one of my Facebook friends. My "friend" Laura A. requested me to be her friend a few months back. I didn't recognize her name and as it turns out, I've never met Laura. She reached out to me saying her family was new to MN and she was trying to get connected to other parents of Autistic children. I accepted her request and I've gotten to know quite a bit about Laura and her son, Ben. Right away I admired how strong of an advocate Laura is on behalf of her son. She and her husband have tried countless interventions and therapies for their son. They moved to MN with hopes of receiving a higher level of care for him. The list goes on and on. I was excited to see one of her Facebook statuses a few months back, saying she was pregnant with their third child. About a month ago, they found out the baby was a boy, the third one for their family! 

Last week, I read one of Laura's status updates. It read something very close to this, "Horrible news to report. An accident occurred which caused significant damage to my abdomen. Sadly, we lost baby Andrew immediately. He was due to arrive in August." Laura was 5 months pregnant.

I immediately sent Laura a message, offering my sympathy and concern for her. I had no idea what happened, nor did I feel it was my place to ask. A few days later, I got a personal message from Laura, explaining that she was changing Ben's diaper and for some reason, he went into fight mode. He kicked Laura in the belly so hard that the baby she was carrying was killed instantly. Laura expressed her sadness, but I need to share her comment regarding how she felt about Ben, her Autistic child. Laura insisted this horrific incident has only made her dedication to Autism Awareness that much stronger. She went on to say how she feels Drew will be Ben's angel in heaven, a special boy to watch over him. Her positive attitude, in this time of despair, was nothing short of remarkable.

I have been around Cole countless times when he is in what doctors call "fight or flight". The level of intensity of his aggression at these times is something beyond what should be physically possible for him. Doctors explain it as the same reaction you have if you were fighting for your life. With Autistic children, it is most often impossible to know what triggers this reaction. Very little can be done to avoid it, detect it, anticipate or discourage it. 

My heart is so heavy for Laura, her family and Ben. Even when I hear the story and live with a person who has Autism, it is still nearly impossible for me to comprehend. Rest in peace Baby Andrew. We all know you will watch over your special brother.

Update on Cole...

I hope you all enjoyed the beautiful weather we've had over the past few days. We had a busy 3-4 days. Connor's family birthday party was this past Saturday. I had plans to do all of the party shopping and preparation on Friday. Unfortunately, I got the stomach flu late Thursday night. It came on really fast and furious. It knocked me out for 24 hours... all day Friday. I had to get up early on Saturday and do all of the running around, with nothing in me for energy and still not feeling more than 70%. As my mom says, "Moms aren't supposed to get sick!". Thankfully we had a PCA for Cole early on Saturday. Pat chipped in to help as much as possible and somehow we got it all done, with literally seconds to spare! 

We were nervous as to how Cole would react to Connor's party. He had been saying, "No party for Connor. Just us today. No cake for Connor." If you read any of my past entries, then you know what happened a few weeks back when we tried to get Cole to go to his cousin's party. Thankfully, the weather was great and Cole did wonderful. He came home shortly before party started and actually seemed happy when he saw the balloons, etc. Cole played with his cousins at times and other times, he played in the front yard with Daddy and Uncle Tim. Cole was patient while Connor opened his presents and he even sang Happy Birthday. It truly was a great day. Connor had the best time and loved every minute of the day, up until 10pm when the last of his cousin's left the bonfire we had. 

Easter went ok. Cole found his basket in the morning and didn't seem to interested in it. He was more concerned about riding his bike outside. He caught wind that we were going to Pat's parents for brunch and he resisted. Cole loves going there, but two gatherings in a row are very hard on him. He sat in our truck and grew very upset when we told him where we were going. Cole wanted to go to the mall, to the museum and many other places that weren't open today. We tried to explain it to him,  but to no avail. He just didn't understand. I told Pat to go ahead with Connor and I would try my best to get Cole to his parents house. 

Cole and I left home and found a Walgreen's that was open. We walked in and Cole asked if he could get a toy. We looked and he found a cool green remote control car. It made all kinds of neat sounds and was just the right price. With his attention diverted, I was able to get him to Pat's parents house and out of the truck without any trouble. Cole enjoyed sitting on their new outdoor swing. He played in the dirt with his cousins and ate some ham. And then he started asking to go home. Grandma Schusted had a wonderful Easter Egg Hunt planned for the boys. She had it organized so well. Each boy had their own basket full of goodies and 10 eggs to find. Each boy was assigned a color. Cole found a few eggs but it became very clear it was time to go. Pat stayed with Connor while I left with Cole. 

We went to see my parents for a few short while. Cole got his first tractor ride of the year. Grandpa Denny said that Cole steered all the way to the duck pond! We visited for about an hour and then moved on. Again, Cole was ready to leave. I took Cole to the park where he did great. Shortly after we arrived, Cole looked at me and said, "I want to go pee in the woods". I looked around and saw a portable toilet. I showed it to Cole and told him he needed to use this bathroom. He said, "It won't flush. That's ok." I offered to help him, but he insisted on doing it all by himself. I never thought I would be proud of my son going potty in the porta-potty!!! I was so relieved he didn't "relieve" himself in the middle of the park... (it's the little things in life)!

We went home and spent time together taking bike rides and going to the park. Soon enough Daddy and Connor got home. The evening went well with the exception of a high level of anxiety about going to the respite house. We haven't talked about it but he knows it's coming. In the past, he's been excited to go. Now he is saying that he doesn't want to go to respite anymore. He's been looking at himself in the mirror, crying and saying, "no more respite". We'll see how Saturday goes. Keep your fingers and toes crossed for all of us.

And while you're at it, please say a prayer for Baby Andrew and his family. And share my blog with anyone you feel might benefit from gaining awareness about Autism and how profoundly it impacts the lives of those who live with it every day.

*Sorry about the duplicate pictures. I'm not sure why it uploaded the picture twice and I can't figure out how to take one down?!?!

Connor; pron (Con-ner); amazing, empathetic, smart, funny, caring, confident... simply the best!

We knew there was something extra special about Connor from the moment he was placed in our arms. He has truly been the most pleasant little boy. So many people comment on how strong Connor's sense-of-self is and how friendly and happy he is. Connor will befriend anyone remotely near his size. He loves to make friends and play.

I remember a few years back, I took Connor to the Eagle's Nest indoor playground. Connor was having a fun time and I saw a young boy, about 10 years old, who appeared to have Autism. As a parent of a child with Autism, I can pick up on it very quickly. Most of the children in the play area avoided this young boy. They could tell something was off and simply didn't give him the time of day. Connor started talking to the boy and asked him to play. They crawled through the play set, climbed the rock wall and Connor let the boy hold his hand. It blew me away. Connor didn't give a rip that this young boy was different. He saws the boy for who he was, a happy young person who wanted a playmate. And Connor took him up on it. I was so proud of Connor quickly was reassured I had one amazing four-year-old for a son.

Connor does get frustrated with Cole's Autism. A few years ago, the boys loved playing Marble Works. It's a game where you build a contraption out of ramps, etc. and the marbles work their way down. We spent a lot of time building the ramps just the way the box displayed. Cole and Connor took turns putting the marbles down the tracks. A few minutes into this, Cole abruptly tore everything apart and threw the pieces all over the room. Connor was heart-broken. I'll never forget the words that came out of his mouth.. "Mommy, I don't like the days when Cole has Autism". 

I could write a book about all of the concessions Connor has to make: wearing certain clothes, getting off the computer when he just sat down, ending playdates early, leaving parties, taking rides in the truck when we are at our witts end, playing outside when he it is 7 degrees and sleeting, and so on. We all make concessions in our lives, but Connor makes them at a pace of 100 to our 1. I think it's healthy to make kids compromise and share. Connor has to do it as a way of life. There is not one hour that passes at our household when Connor is not asked to make a concession of some degree. We try very hard to reason with Cole, but his brain is not wired to comprehend it. The result often ends up with us dropping what we're doing so Cole does not have a fit. It's not fair, but many times it is life.

Despite all of the turmoil that comes with having an Autistic brother, Connor takes it all in stride, and then some. Never once in his life has he ever said anything mean about Cole. At his tender age, he can sense when he needs to step up and play the big brother to Cole. It's evident he watches Pat and I closely to learn how we deal with Cole. Sometimes I think Connor does a better job with Cole then we do. Cole ADORES Connor. When Connor asks something of Cole, the success rate must be at least 90%. I wish there could have been a video camera in our home last night. Cole was having a good evening. We were into our nightly routine and things were going well. For some reason, Connor took it upon himself to "care" for Cole. He sat on the toilet while Cole was in the tub. I was in our bedroom and took every chance I could to peek in and listen. Again, I was blown away. Connor used his gentle, sensitive tone of voice and kindly asked Cole to stop splashing. And Cole stopped. He then asked, "Cole, do you want Connor to help you wash your body, buddy?" Cole stood up and excitedly said, "YES!". Connor grabbed the soap and proceed to help Cole wash himself. Typically this is a challenge. Cole would much rather play then get his hair and body washed. He then kept reinforcing Cole's good behavior by constantly saying things like, "Great job in the tub Cole. Way to listen!! You're doing a good job tonight Cole. I like the picture you drew Cole- great job!" This went on all night and I'm not exaggerating, nor did I ask one thing of Connor. He did this all on his own. 

I took Connor's face in my hands, gave him tons of kisses and told him many times how proud I was of him and that he was by far, the BEST brother in the world. I wish I could put this into words. There are so many example I would love to share with you. Connor deserves the recognition. I don't know what we would do without Connor in our lives. He is my therapy. I have no doubt that he was hand-picked for our family. I'm fully convinced there is not one other 5-3/4 year old who could live in Connor's shoes and do it with such pride, confidence and happiness. He teaches me so much about life and about myself. Pat and I are constantly looking at each other with a "can you believe him" expression. The joy and positive attitude he brings to our family often keeps us going. He's our little rock star, in more than one sense of the word.

If you have heard the expression, 'pay it forward', I know Connor's life will be filled with countless blessings. Even though it's the last thing he would expect in return.