Not the "present" we intended to give

After years of struggling with family birthday parties, Cole had made some great progress in the past year or so. He seemed to tolerate going to parties and everything that goes along with them.

We got an invitation to his cousin, Max's, party a few weeks ago. Cole usually loves their house. They have a great backyard with lots of room to run around. And they have lots of cool toys in the basement. Max's party was last Friday night. Cole had therapy until 5pm, so we had him transported right to Max's house. I sent a detailed picture schedule with him to therapy that day, which showed everything that would happen. I emphasized there would be no dog at their house. Last time we were there, they were dog-sitting and Cole was petrified. The staff at MAC took Cole through the schedule several times throughout the day. 

Shortly after 6pm, Cole arrived. He walked up to the house, but refused to come in. He said he wanted to go home with Pat, Connor and I. We all took turns trying to gently persuade him to come inside. He was fighting back tears and filling with anxiety. A few minutes later, Cole came inside and I was able to give him a piece of cheese. He still was insisting on going home. And then he smacked me. He hit me three times and he got three stand up, sit downs. Cole cooperated, but started to cry and then crumbled up the cheese in his hands. It went all over the floor. As I was leaning over to pick up the cheese, Cole kicked their wall and put a hole right in the sheetrock. We grabbed Cole and instantly had to leave. Luckily Connor was able to stay for the party. Pat's parents volunteered to bring him home afterward. 

We could not believe Cole kicked their wall. Even though he does this stuff at home, in eight years he has never exhibited this behavior at someone else's home. We were sad, devastated and embarrassed. This happened in front of everyone. Usually we're able to calm Cole and get him to stay at a party or event. Not this time, and with terrible consequences. I could not help but break down. Sometimes life with Autism is too hard, and too unfair.

Once we got Cole home he was perfectly fine. He played on the computer, ate dinner and drew pictures on his white board. For Pat and I, it was a depressing night. One that was hard to bounce back from. Times like this have a way of taking the wind from your sails. 

The rest of the weekend went well. Cole had a fun Saturday with his PCA and then he spent the night at Grandma and Grandpa Cooney's house. He and Connor had a great time and they got a surprise visit from Tara and her family. Elle even ended up spending the night, too! Pat and I got a chance to look for new furniture and enjoy dinner together. We both got a full night of sleep and that was wonderful!

We spent Sunday raking leaves and playing in the yard. Cole loved playing with his new John Deere wheel barrow. He went on bike rides with Pat and we built a bonfire. Cole also amazed us with his drawing capabilities. He loves to draw on his white board and his pictures are getting much for detailed. The one I'm showing here is Pat driving his boat. Cole wrote Dad and Minnesota all by himself. He also illustrated fish and turtles in the water, along with the boat motor and lines to show the boat moving fast. Connor also worked on his art project for the Riverview School Art Fair. He did an amazing job!

Saturday was the two month anniversary of Cole wearing underwear! Way to go Cole, we are so proud of you. 

3 guys at Rosedale?!?!

We've had a good week and a pretty good weekend. Cole got home on Saturday afternoon, following a successful and fun stay at the respite house. He was so excited when I picked him up and he talked up a storm on the way home. He told me how he went to the mall with his red t-shirt on and how he likes to swing "quickly". We arrived home to a yard full of boys, five to be exact. Connor enjoyed having the neighborhood boys over one of spring's beautiful days. The kids were having fun playing with our toys, jumping on the trampoline and trading Pokeman cards in the sun. Cole got home and jumped right in! He greeted the boys and chose to play with them at times. Better yet, he didn't get upset and want Connor all to himself.... this has been a big struggle in years past. It was a fun day. Pat even got his new fish finder installed on the boat!! It was funny, Cole kept saying.... "Daddy's giving the boat a tune-up!"

Cole slept pretty well, only getting up once. We are hoping the new medication is helping but the verdict is still out. Shannon was up with Cole four times one night this past week. 

We were outside early today. Cole got Connor to come outside, even though Connor was running a low temp. Cole doesn't understand when Connor doesn't feel well. Taking no for an answer is not in the cards, especially since he hasn't seen much of his best buddy in the past week. There was play time to make up for. So we headed outside and played. Cole LOVES to be outside. His favorite thing right now is to play in the dirt, which is no longer frozen he tells us. He also loves to push the endless stream of water that runs along the curb in front of our house. He uses the squeegee to push it fast and make big waves and splashes. Oh what fun!! He even got to help Daddy gas up the tractor and start it up for the first time this year. This lasted until about 3pm, when the witching hour set in. This usually happens on weekend days when we don't have a PCA to work with Cole. I think he gets a little stir crazy after 8-10 hours at home, no matter how busy he's been all day. 

We had plans today to drop off the boys at my parent's house, so Pat and I could go to our Godchild's All-Star hockey game. I kept telling Cole that in a little while, we would go bye-bye and then to Grandpa's house. For those of you who don't know, Cole loves his grandparent's houses. Typically he'll go there without any resistance. Today was different. Cole wanted to go to Southdale instead. We tried for over an hour to try to convince him to do other things and then go to Grandpa's. It didn't work, no matter how enticing we thought our offers were. Cole wanted Pat (and only Pat) to take him and Connor to Rosedale. Mom wasn't allowed. So Pat graciously took the boys to Rosedale while I went to Breyden's hockey game. Pat tells me the trip to Rosedale went well. They rode the elevator several times and took three trips to the book store. Cole came home in a much better mood and now we're almost through the rough part of the day. 

I had a fun time at Brey's hockey game. It was fun to see him skate. I can still remember the day he was born. To see him skating aggressively and understanding the game of hockey is amazing. Pat would have been proud of him. 

It was also a little hard to be at the game. I couldn't help but notice all of the "normal" families. Parents with their children, kids running around the arena with toys and treats. The kids who formed a hockey cheer gang of sorts. Parents chatting with one another and cheering on their loved ones. It saddened me to know this might never be possible for our family. Right now we have to sneak out of the house to get Connor to gymnastics each week and we already have a PCA hired for the Friday nights he'll be playing baseball this spring. What is going to happen when Connor's extra-curricular activities become more demanding of our time and energy? I just don't know how we'll handle it with Cole. I am hoping Cole will make enough progress to go to Connor's games, etc. but I have to be realistic. It might not be in the cards for us, and that is hard... really hard. Again, it's the little things that people may take for granted. Playing sports, going to birthday parties and other fun activities are not things every family has the privilege of doing. Cherish those times with your children and cheer them on with pride and appreciation. 

That said, we did sign Cole up for his second season of Miracle League baseball. We are lucky to have this league in Blaine. The league is for children of all disabilities and the field is designed to accommodate our kids. Cole played last year and seemed to enjoy it. He has been talking about it this year already. Although he has plans for Connor to be his baseball buddy, instead of a PCA. We'll have to see how it goes. I think Connor might be one heck of a helper! 

*Cole just read 100 sight word flash cards like they were old news. And it was the first time I had shown them to him.  :-)  WAY TO GO COLE, you're a smart young man.

I'll take a super-size order of sleep please.

There have been quite a few yawns at the Schusted household this past week. For some reason, Cole's sleep habits are on a rapid decline. We've been fighting the sleep battle for quite some time, but it's now getting to the point where it's out of hand. 

We used to have a problem getting Cole to sleep. It was not unusual for us to have a two hour ordeal just to get him to stay in his bedroom and fall asleep for the night. We endured that for several months before trying Melatonin. Melatonin is a natural sleep aid that our doctor recommended to us. It has been a miracle worker for us. We grind up the pill each night, put it inside a Mint Oreo cookie and a half hour later, Cole is laying in bed and out for the count. 

The down side of Melatonin is that it will get Cole to sleep but it doesn't keep him asleep. For the past 4-6 months, Cole has been getting up multiple times during the night. Usually he wants us to change the movie in his DVD player. I should back up here. Cole needs to have a movie playing in order to sleep. We were desperate prior to Melatonin and one night offered him a movie to fall asleep. Cole called this 'movie rest'. It took one night and now Cole needs his movie rest every night, all night long. This is one of the tough things about Autism... you do something one time and there is no breaking away from it. Believe me, if we could, we would. 

The past month or so, Cole has literally been getting up 6-12 times per night. Pat and I 'graciously' take turns changing Cole's movie, getting his juice, etc. We are lucky that he usually rolls over and falls right back to sleep. Only a few times has he turned on our light and said "Good Morning Mommy" when it's 1:18am. Regardless of what Cole needs or does when he wakes up at night, Pat and I are not sleeping. We are exhausted and frustrated. It's getting harder and harder to function. 

This past Monday topped the cake. Cole went to bed well and we soon followed. It didn't last long. Cole was up for the "day" at 11:30pm... yes 11:30pm. We could not get him back to sleep no matter how hard we tried. We took turns changing movies, snuggling, turning off his light, asking him to stop kicking the wall, etc. It was nearly impossible to remain calm and patient. And it lasted until 5:45am. Pat had to work the next day and I was volunteering at Connor's school all day. Cole himself had a full day of therapy. I couldn't believe this was happening. Cole finally fell asleep around 5:45, but I had to get him up for the day at 7am. He cooperated and went on Care Cab. His therapists said he had a good day, I'm not sure how. I felt and looked like a walking zombie. 

I called Cole's Autism doctor right away in the morning. We finally connected on Tuesday. He agreed to give us a prescription medication that should help Cole stay asleep. The good thing is we can crush this medication into the Melatonin pill, so Cole should take it with ease. He has taken it for two nights now. The medication takes a little time to actually work so the verdict is still out. The past two nights have gone better. It's amazing how getting up only 2-4 times a night is a good night's sleep! Lets hope the new medication does what it's supposed to, with no negative sided affects.

On a positive note, Cole has made us smile so much this week. Here are just a few things that we cherished from this past week:

-COLE WILL CELEBRATE HIS SIX WEEK ANNIVERSARY OF WEARING UNDIES ON SATURDAY!!!   Way to go Cole!!!

-His Youtube.com typing skills continue to improve. Just tonight he typed in "roller coaster big hill", without any assistance!!

- He also knows how to work Skype better than we do. Thank God or we would not be able to successfully Skype with Katie in the Netherlands!!

-Cole has had so much fun listening to music with his rocker brother, Connor. Connor taught Cole how to count into a song (1,2,3,4) before it starts, and to play the air drums. 

- I checked on Cole while he was going poop in the potty. I came in to make sure he flushed, etc. He said to me, "Uh oh, toilet is BIG. Toilet is BIG." I looked and he had clogged the toilet (Pat would be proud!). I laughed and told him, "That's ok Cole, Mommy will fix it!"

- We've been reading his daily progress reports from MAC Therapy. Cole is making huge strides at MAC. We are so proud of him and can't wait for his progress meeting in a month or so.

- Cole has a date with his PCA, Alli, on Saturday. He only gets to see her once a month and he is beyond excited. He has grand plans for the day. He knew he would see Alli in March. He has asked me every day since March 1st, "Cole see Alli today?!"

- Cole has been asking for Heath to pick him up from MAC. Heath is a worker from Cole's respite house. I was happy to hear this, it tells me Cole is likes his respite house and is looking forward to his stay there next week! 

-Cole sat on the couch tonight and snuggled me for about 15 minutes- there is nothing better than that!

-We had a successful family night at Chuck E Cheese last weekend. Cole did so great. He chose his own games and put the tokens in himself. He was so well-behaved and easy to keep track of. That is huge progress for us. 18 months ago, we swore we would never go there again.  We also took him to the fireplace store (with the help of my mom). We were able to be in the store for nearly an hour!!! 

As you can see, we truly cherish the little things with Cole. He brings such a beautiful perspective to life and we acknowledge and appreciate all of his accomplishments, both big and small. Thanks for being you Cole, you make my heart fill with immense joy and pride. I love you to the moon and back (and then some).

Long entry, but a very good dose of what life is like with an Autistic child

Much has happened in the past week. Cole turned 8 years old on Saturday! He thoroughly enjoyed his birthday party on Sunday. He did awesome. He read some his cards and had such good manners when he opened his gifts. It was a nice way to end a tough weekend. We got back from vacation late Thursday night but we didn't get to see Cole until after therapy on Friday. Cole was pretty good that night, but Saturday was tough. Cole was both testing us and letting us know he didn't like us being away from him for 7 days. The party on Sunday was a nice way to "get through" a tough couple of days. 

And then came Tuesday....

On Tuesday I had to take Cole to the doctor for his check up and pre-op appointment. Cole has an extreme fear of the dentist and after our last attempt, the dentist advised us to put him under general anesthesia so we could get Cole the dental care he needs. So on Tuesday morning, we headed down to Cole's doctor. The plan was to go to the appointment, head back to Grandpa's, visit for a few minutes and then have Care Cab take Cole to MAC for therapy. The doctor appointment went really well. They got everything done except the vision and hearing test. Dr Sakkal greeted us with hugs and was so impressed with Cole's progress. 

I knew the change in routine would be hard for Cole. I prepared a visual schedule of what he should expect on Tuesday. I showed it to him several times, we read it out loud and I verbally kept reminding him of the day's plans. 

After we left the doctor, we were headed to my parent's house and Cole saw the Care Cab van waiting down the block. Instantly he threw a fit, "No Care Cab today. No MAC. Want to see Grandpa. Want to stay home. NO MAC TODAY!!!".  I asked Cole if he wanted Mommy to take him to MAC. He replied, "Yes, mommy take you to MAC". So I pulled up along side Care Cab, explained the situation and proceeded to turn around. I knew I could not let him go into my parent's house, for fear he would not leave to go to therapy, so I kept driving. When Cole realized I was going to take him to MAC, he flipped out in the car. He was screaming and kicking, crying and yelling.... for 20 minutes. 

I called his therapist to warn her that we would have a challenge on our hands. Her response was, "We need to follow through on this demand. We will get him inside." Cole calmed down a little in the truck, but when we got close to MAC, he became very filled with anxiety.... I mean VERY filled.

I pulled into the parking lot and Cole unbuckled himself and hopped out of his seat. He is good at this and will move around different spots in the truck so you can't reach him. His therapist came out to help. Cole was crying and yelling. He did NOT want to go inside. I tried for a minute to get him out of the truck. Cole then became aggressive. 

We are implementing a behavior technique with Cole whenever he gets aggressive. We have big problems at home with Cole's aggression. For about 3-4 weeks, we have been implementing the Stand Up, Sit Down technique (SU/SD). The technique is this: when Cole is aggressive to himself, others or property, we immediately tell him to stand up. He then needs to stop and stand up. Then we tell him to sit down. He then needs to sit down. We keep repeating this until Cole does one quiet stand up and sit down in a row, without touching anything. Until Tuesday, the longest it's taken for Cole to complete this has been 45 seconds. Furthermore, the aggression has gone way down. I can't remember the last time he hit Connor.  :-)

Now back to the truck... Cole got aggressive, so I immediately did the SU/SD. After about three minutes, we were able to corner him in the truck and physically remove him. Once he got out of the truck, I continued with the SU/SD while the therapist ran around and shut the truck doors. Cole was incredibly worked up. He kept getting aggressive during the technique and could not complete the SU/SD in the manner described above. So I had to keep going. This went on for at least 15 minutes... outside, in 20 degree weather, on the pavement. Finally Cole cooperated and did one SU/SD quietly. I then told him "Time to go inside Cole" and started to walk up the entry. Cole ran to my truck, which was thankfully locked. He then followed me, still crying and saying he wanted to go home. 

Once we got inside, I told Cole he needed to put his jacket in his locker. He hit me. So again, we did the SU/SD. This went on for another 7-10 minutes. Cole finally cooperated and we were able to get his coat off. At that point, the therapist said I should go. I said goodbye to Cole and walked out. 

I wish I could express how extremely difficult this was for me. It instantly brought me to tears. I have no problem implementing the SU/SD technique. In fact, I've been very pleased with the results and I love how neutral the technique is. It is very hard to see Cole so sad, wanting to be with me and me not able to console him or give in. My maternal instincts wanted to cuddle him, turn the car around and spend the day with him. I didn't want him to think I didn't love him. It's so difficult to discipline and teach a child who has the capacity to reason and understand. 

Five minutes after I left MAC, Cole's therapist called me to tell me I did an outstanding job. She also said I would not believe it if I saw Cole now. She said he immediately calmed down, turned the corner and went into therapy like it was any other day. The therapist said it was critical for me to follow through like I did. It is clear that Cole was trying to manipulate me. Even though his intentions were pure, he needs to know that Mom and Dad know what's best and he needs to abide by that. It was so hard and something I hope I never have to do again.

It sure was wonderful to hear Cole say, "Hi Mom!!" and give me hugs and kisses when he saw me after therapy. He still loved me. :-)

And then came Thursday.....

Thursday was the day of "surgery". Cole could not have anything to eat after midnight. Of coarse, he woke up for the day at 5:30am and went to the kitchen requesting Spaghettio's and tuna. I quickly diverted him onto the computer and put the plastic locks on all of the cupboards. 

We got to Children's West and Cole was excited to see a new doctor. He didn't know it was for a dental procedure. If he did, there is no way he would get out of the car. The staff was so friendly, flexible and well prepared. The facility was well equipped for children. Cole had a great time playing while we talked with the doctors, etc.  We tried to get Cole to take a small dose of medicine that would make him calm. He took an itty bitty sip and said now way. So we played until it was Cole's turn. We went into the induction room and right when Cole saw it, he froze and instantly resisted. He cried and wanted to go home. He put his legs on the door frame to prevent himself from going in. We had to overpower him and force him into the room. Pat sat on a chair with him and the two doctors quickly put the mask on Cole's nose and mouth. He fought it so hard... crying and squirming. It was so painful to watch. I could barely look. It took about 20 seconds and slowly he went to sleep. It seemed like it took forever. There is something about seeing your child in that state that fills you with udder sadness. It took me several minutes to compose myself, after they assured me he was breathing at 100% capacity and doing great. 

The staff let me clip Cole's toe nails. It was so great! For those of you who don't know, toe nail clipping is about as traumatic for Cole as the dentist. To do it while he was sleeping was a dream. His toes came out looking like he spent the day at the spa!

We then waited in the family area. After about 1-1/2 hours, the dentist came out to say Cole did very well and that he was headed to recovery soon. Cole did have a few cavities, but all-in-all, the dentist said he was expecting it to be worse. I'm just relieved he got a thorough cleaning, sealants and the necessary repairs.  The dentist took so much time talking with us. He is truly unique. He has been working with special needs children for 39 years. He told us he understands what we go through each day and called us both angels. 

Soon enough it was time to see Cole. They kindly took out all of the IVs before he woke up. We were in the room with him when he woke up. It was so nice to be there. He was out of it for a while and said his tummy and mouth hurt. He kept saying, "my mouth is sick" and he was picking at his teeth. I'm sure they were sore, despite the medication. He woke up asking for McDonald's- in true Cole fashion! He was emotional in the car on the way home but by 1:30-  he was playing with Connor and was back to his perky self.

And then there was Thursday night....

To top off the week, Cole decided to get up at least once an hour last night. I'm not exaggerating when I say we got up with him at least 10 times from 11p - 7a. It was a rough night. The Melatonin works to get Cole to sleep but unfortunately it does not keep him asleep. A good night with Cole is him sleeping, uninterrupted until 3am, it is no different than having a baby... sometimes it's worse. 

Some weeks are like this. We grow in times of challenge, I know I have this week. And please know the week wasn't all difficult. One highlight was Cole's response to Connor giving him a cookie. Cole looked at Connor and said, "Thank you, enjoy your ride!" I laughed hysterically thinking Cole must really enjoy the numerous trips to Nickelodeon Universe!

Have a great weekend everyone. Sorry for the long entry and numerous pics! 

*Isn't the birthday picture cute- look at that handsome boy.