Cole; one very brave young boy

This past week, the time arrived for Cole to try three nights of respite care. Pat and I have been very stressed about sending Cole to the respite house, despite meeting the staff, touring the house, re-assurance from Cole's Case Manager, etc. It is impossible to put into words just how difficult it is to leave a vulnerable child out of your control. The statistics for abuse against these children are astounding. If something were to happen to Cole, he could never tell us and I could never live with myself.

Before we sent him there, I called the county to see if there were any reports on the house. I carefully interviewed the manager about all of the training and background check steps are taken with each staff member. I insisted on talking to other families who have children at the respite house. I had one of the staff members come to our house to meet Cole ahead of time. We even cancelled two times before actually sending him. 

Our case manager worked very hard to get additional funding for Cole to attend the respite house. It is un-Godly expensive; as in $440/day! The 42 days Cole is scheduled to go there this year will cost over $18,000. There was an opening (they are hard to come by) so we felt like it was time to give it a try. Worse case scenario, we try it once and never do it again. However, if it did go well, Pat, Connor and I would get to enjoy three days/nights to ourselves, once a month. 

I prepared the staff well. I filled out the intake form (with notes all in the margins) and even wrote my own intake form with all kinds of helpful information about Cole and what he likes to do for fun. To me, that was the key to respite success. If Cole has fun the first time around, he will be more cooperative the second time. If he is miserable, you probably won't get him out of the car for round two. I made a picture schedule for Cole so he could see exactly what was going to happen and when he would come home. I packed his favorite toys and snacks. I sent his John Deere blanket and pillow.

On Wednesday, our PCA Haley brought Cole to the respite house. He cried sad tears.... you know, the alligator kind. He was so sad. After about 20 minutes, Haley was able to leave and Cole even told her goodbye. I called to check in later that night, but the line was busy. I did get a call from the house at 10pm. Laura, the "house mom", called to say that Cole had settled down nicely but she was not calling with good news. My heart SANK. What was she going to tell me? She proceeded to tell me that Cole was sleeping in a chair, woke up out of his sleep and threw up everywhere. Even though he had only been at the house for 4-5 hours, I had to go get him. I got there, carried him to the truck and he threw up again. Poor Coley. 

Pat and I were so bummed. We didn't care that we had to get Cole. We were more concerned this happened on the first night. Why couldn't he have just been there for one night before this happened? We were certain he would never go back again. As we do so many times with Cole, we had to roll with it.

To top it off, Connor came to me in bed at 2am and he was wet. I went to pull him close to me and realized he smelled of throw up. He didn't even knew he threw up. I went to his bed and it was everywhere. Two kiddos with the flu in a 4 hour time span. Hey, at least we got it over in one shot!

The next day the kids woke up early, ready for the day. They recovered in record time. I kept them both at home, but had long-standing plans for a birthday tea with my mom, sister and niece. My dad graciously offered to watch the boys while us girls went to have tea and lunch. Right as I was walking out the door at my parents, the respite manager called to say she would love to have Cole back and offered to have a staff member come pick him up. This put a new spin on the day. I was down at my parents and Cole's things were up at home. The respite house was in between. We also had to figure out a way for the staff member to get Cole while I was not there and for me to get home to gather Cole's things and get them to the house without him seeing me. I literally said to my mom, "What would I do without such wonderful parents?"  They both helped out and everything went well to get Cole back to the respite house. 

Cole stayed at the respite house for two nights. Things went really well. He slept good, had fun and made us incredibly proud. We went as a family to pick him up on Saturday. It was so great to hold Cole and kiss him. He was so happy to see us. Cole took Connor's head in his hands and said, "want to go play with Connor". I will never forget it. I was so proud of our brave young boy. I can't imagine going to a house I've never seen, to stay for two nights with people I've never met. (I write that and shake my head in disbelief that we actually sent him). The staff was so wonderful. They told us everything they did with Cole and gave me four pages of hand written notes that detailed nearly every minute of his stay. I would consider it a success.

The first night Cole was gone was stressful for us. I thought about him constantly and didn't sleep well. Even though I knew things were going well, it was so hard to let go. The second night, we took Connor to dinner at Bonfire and came to the realization that the three of us do need "respite" from Cole. We need time to do "normal" things and things that aren't possible due to Cole's disability. Once again, our amazing case manager was right. 

On a side note, my prayers go out to the Fandre family. Wendy, 35, passed away last Monday from complications from a seizure and heart attack. She leaves behind two children and a husband. 

I also have a heavy heart for the Paul family. Dick Paul, my dad's best friend for many years, passed away unexpectedly on Saturday. My thoughts are with my dad and Dick's family as they mourn this tragic loss.

Cherish your loved ones. Life is more precious than we ever realize.

Rollercoaster Ride

  I don't like roller coasters, never have. Maybe it's an interesting metaphor for me- considering I feel like I'm always on one. It's the perfect way to describe our life with Cole. Climbing the ascent, free falling, whipping around a curve, upside down, holding on for dear life, scared, excited... you know the feelings. The tide can change so quickly in our house, at the drop of at hat. You never know what's coming next. Yes, it is a roller coaster ride.

Taking off, the exhilarating part...

Cole did really well with the transition to his new room. He has woken up every day since he got home asking if he still has his new floors. He loves the rug in his room, the wall padding and his new bedspread. I was nervous that he would be upset having been away from home for six days. Cole did really well when he came home. He was SO excited to see Connor. They have been attached at the hip ever since. They have literally been singing, dancing, and racing cars for days. 

I also got some really good feedback from the MN Autism Center (MAC) , where Cole just completed his first week of intensive ABA Therapy. He did really well. It's very intense, for Cole and our family. But it's going to be worth it. The therapists say Cole is doing great and adjusting well to the expectations placed on him. I had a discussion with the lead therapist about a plan to stop Cole's physically aggressive behaviors. I will go in early this week to get trained on the plan. We will more than likely need to keep Cole at MAC and/or home for a good 2-3 weeks until the behaviors end. During this time, MAC will send therapists to our home to oversee how well we implement the plan and offer assistance. These training sessions, etc. are mandatory and come up without warning. What a blessing that I am at home and able to hold up our end of this deal. 

I was enthused when the lead therapist told me that in his 14 years of doing this therapy, he has never seen a child with as much potential as Cole. He strongly feels that when we eliminate the aggressive behaviors and non-compliance issues, Cole's language and cognitive skills will soar. There is no guarantee, but we'll take any progress we can get! 

Hold on, we're coming into a curve...

On Saturday we attended a going away party for Pat's sister, Katie. She leaves Thursday to study for six months in the Netherlands. Friends and family gathered to wish her well. Cole had fun at the party, for a while. He danced, sang and played with his cousins. Slowly Cole's patience worn thin. Right as the party was getting into full swing, Cole reached his breaking point. He was mad, physically aggressive and constantly leaving the party area. We had no choice but to leave. Connor was heart broken. He was having a wonderful time with his cousins and the last thing he wanted to do was go home. We tried to have Connor hide, so we could leave with Cole and let Connor ride home with his Uncle. Cole got half way up the stairs and yelled for Connor. We knew it wouldn't work. Pat brought Cole to the truck and I went back to get Connor. It was so sad. Connor ran to me with tears in his eyes. I felt so bad for him. Autism just isn't fair. 

I got Connor to the truck and Cole was beside himself. We passed his breaking point and now it was tantrum time. Cole was smashing his head into the window, yelling, crying, kicking, etc. Connor was still crying and that made Cole even more mad. I had to sit in between the two kids to keep them both safe and safe for Pat to drive. The fits went on for ten minutes until we got the the Dairy Queen. Cole was happy with his purple (chocolate) cone and Connor got a root beer float. It's hard to put into words the intensity of the situation, but we were all in fright or flight mode. Thank God for DQ. It's times like this when we can't help but feel envious of people with all neuro-typical children. They have such freedom. We, on the other hand, are constantly at Cole's mercy. 

Only a few bumps....

Today went ok. We all played outside and even had a winter bonfire. Check out the pictures!! The hard thing again, was Cole not wanting to be one step away from Connor. Cole dictated everything they did. Cole was aggressive with us today. I was punched, pinched, scratched and kicked countless times- many times without knowing it was coming. It gets old and it's just not fair. We are anxious to hear what plan MAC has to stop this behavior. It would be a miracle in our eyes. 

*Please say a prayer for Wendy Fandre. I've known Wendy for almost 20 years. I played sports against her in high school. After that, we always worked out at the same health club and knew one another through mutual friends. Wendy, a 35 year old mother of two, had a massive heart attack last Monday. She had a pre-existing heart condition. Wendy was without oxygen for an extended period of time and as a result she has major brain damage. Doctors have told Wendy's family there is no chance she will ever recover. Today her family removed life support. Wendy is breathing on her own, but that is all her body is capable of. We don't know what the future holds, please keep her family in your prayers. caringbridge.org  wendy fandre  I've put her picture on my blog. 

Sadly, it is things like this that make you realize you have nothing to complain about. I may not always have it easy, but I am here. I love my life, my husband, kids and family. I cherish each day I get with them and I know that anything I get to do with them, good or bad, fun or not-so-fun... is a gift.

Cole's new room!!!!

It's been an incredibly busy six days. I feel like I've hosted my own episode of "Extreme Home Makeover". I can only imagine what those people go through! It all started a few weeks before Christmas when I emailed Cole's Case Manager to see if we could get approval for one more carpet cleaning this year. She emailed me back saying, "Yes, but have you ever thought about putting in hard wood?". Long story short, the state had some incremental funding in 2008 and if were about to get two bids, submit the paperwork and get the work started by 12.31.08, we could get $8/sq foot funded by Cole's waiver program. Luckily, one of our neighbors is a general contractor and he had just done this exact thing in our next door neighbor's house. We had him and another company bid the job. I submitted the paperwork (it's a lot of work and not as easy as it seems!). Keep in mind, it was the holidays. Needless to say, we only had to fund a small portion of the work ourselves and this turned out to be an opportunity we couldn't refuse.

The work started on 12.31.08 at about 7pm. Pat pulled out the carpet on the stairs and that would suffice until this week. The next step was to figure out where Cole would go for six days while we take apart his room, have the flooring installed, sanded and stained. Thank God our families are amazing and offered to help without hesitation. Everything just fell into place. Once Cole left on Thursday, Pat and I got busy preparing the house. We had to take Cole's entire room apart. I took it upon myself to make my best attempt at fixing the countless dings in his walls. I washed the baseboards and found even more chocolate milk stains (remember the previous blog entry?). We took apart basically our entire upstairs. It was a lot of work!

The rest of the work resumed on Friday. Our neighbor and his work partner worked on Friday night and for 14+ hours on both Saturday and Sunday. Brian was able to fix Cole's doorway. When my dad pushed on the door frame, the entire wall literally moved about 1". Tons of door slamming and studs that weren't screwed in were a bad combination. Brian even brought spray to hide the chocolate milk on the ceiling. He was so thorough and did such great work in our home.

On Monday morning, Connor and I headed to a hotel and Pat met us there after work. Tara, Elle and Ethan even joined us for some swimming. It was a fun two days. We missed Cole so much. It's so hard to be away from him, especially when you know he's so close by. We sent him pictures of the progress and told him he would come home to a new bedroom. There is no possible way he could  have been in the house over the weekend. The house looked like a land mine had gone off. It was really loud and not a place for any of us, let alone Cole. 

We finally got to come back into the house Wednesday at 1pm. My dad met me here to start the re-assembly. Pat had  important work commitments and couldn't get the day off. It was so important to me to have Cole's room ready for him. I got a new bedspread and rug. We also got the padding installed on his walls. The dings were fixed; with the exception of the main wall that had several 5-7" holes that need professional repairs (that is what the padding is for). We put new handles on his dresser and put everything back in order. After that, my dad and I carried up couches, chairs, a computer desk and many other things. My dad is so handy. He can fix anything, I swear. Cole does so much damage to our house. My dad was able to make some mends to things and I felt like I was moving into a new home. It was GREAT! Thanks DAD!!! 

Brendan came over to help move our really heavy Hickory table. Thanks B. It didn't take too long and pretty soon the house started looking like normal again. Just in time for Cole. 

Cole got home and he was thrilled to see his new room. He was so excited and loved it. I was nervous that he might be upset about not having carpet. Cole loved his new wood floors. He said, "Carpet is gone. The garbage man took it". He was so happy to see us. He hugged Connor and asked him to play. They played on the computer, raced their 4-wheelers up and down the hallway and sang karaoke. It was a great night, for so many reasons. 

I'm so thankful I asked for another carpet cleaning and I'm even more thankful to have the best Case Manager I could ask for. She has worked just as hard as I have to make this happen. WE have such a great team rooting and working for Cole.

Thank you to everyone who made this possible. We are so very thankful and could not have done this without you. 

LOTS and LOTS going on

Ahhh... where to begin. Sorry the updates have been lack luster as of late. To say we've been busy us an understatement. I have so much on my plate this week I'm lucky if my teeth get brushed each morning. But it will all be worth it!

First, we are in the process of extending the wood flooring in our kitchen area to most of the main level of our home, including Cole's room. I have been working very hard with Cole's case manager to get approvals for new flooring in parts of our home. We lucked out. The county had some incremental funds at the end of the year. After a ton of hard work, we got approved for up to $8/sq foot. We hurried and got the bids done, chose a contractor and the work is being done this weekend. The $8 didn't cover the entire cost, but it made it so we could not resist. 

The work is in progress right now. We had to get Cole out of the house for 5 days!!!  It's so hard on all of us to do that, but it's for the best. Cole's room is dismantled down to the floor boards. And everything from his room and our living room is in the basement family room and spare bedroom. There is no place to go. We all have to be out for two days while they sand and put the finish on. I can't wait for Wednesday to say the least. 

I'm the midst of all of this, I'm working very hard with our case manager to develop a new waiver budget plan for next year. I have to write a 15 page document on how/where/why each waiver dollar will be spent. There are pages of guidelines and numerous things to research. It's a huge undertaking but Cole is worth every second I spend on it.

We are also transitioning Cole out of Fraser Academy and into a full-time ABA therapy program. I'll give more details in a later blog entry. He starts Monday and will be one of twelve children at the MN Autism Center. He will have three therapists who will each work with him one-on-one, for forty hours a week. There is also a huge family component and training program. It's going to be intense but hopefully worth it's weight in gold. I have been preparing a lot for that- tons of meetings, paperwork, transportation schedules, etc. and there is much more to go. More to come on that.

We survived holiday break. The last 4-5 days were REALLY rough. Cole was so aggressive with all of us. It was so hard on us. I tried very hard to stay strong and patient, but even I wore down those last few days. I can't stress just how difficult it is for Cole to be out of routine, especially in the winter time when he can't stay outside for long periods of time. He resorted to hitting, scratching, throwing things, throwing food (think bowls of tomato soup against the wall and buckets of water from the tub). Yes, it was a long break.

Thanks to everyone- specifically our AMAZING families who are helping us through these next few days with Cole while our flooring is installed. We could not do it without you. Our gratitude to each of you is profound. We love you and couldn't get through this journey without each of you. Yes, we have the best extended family in the world. 

A tough day

Many of you have asked how things went with the John Deere undies. Cole spent the previous night at his grandparent's house. Grandpa was able to get Cole into the undies quite easily. I picked Cole up and right when we got in the car, he started talking about going to the store to get pull-ups, throwing away his undies, etc. Sure enough, we got home and in a matter of minutes, Cole was undressed from the waist down. We tried everything to convince him that it was January and time to wear his undies. It just didn't work. Cole was full of anxiety, searching high and low for pull ups. He refused to put undies on and threw them in the garbage. He was putting his hands in places that are not sanitary. Some things just aren't worth the fight. This was one of those times. We had to make a quick decision that could have many ramifications. Rather than risk Cole thinking it was ok to walk around half naked or regression in the potty training gains he's made, we put the pull ups back on. I realized it was too big of a leap for Cole. I think we need to re-evaluate the underwear goals. We need to keep him going potty on the potty and try to get him to wear the undies for even 5-10 minutes each day; build up a tolerance for him. We'll see how that works.

Today was a really rough day. To be honest, it was one of those days where Pat and I question how long Cole will be living in our home. The last thing we want to do is not have Cole with us each day, but there are days when it doesn't seem possible. It was one of those days where we describe Cole as a wrecking ball. He is set off at a moments notice, for no apparent reason. There are sheet rock crumbles in the hallway from where he slammed his door. He's done this so many times that the door frame is warped, the wood is splitting and the sheet rock is in despair. He's hit me so much today that my upper arms still sting. He's been physical with all of us. He kicks, scratches, punches- you name it. My heart broke today when I overheard Pat telling Connor to not walk in certain areas of the house because Cole might become aggressive toward him. It's not the first time we've had to tell Connor this, in fact, we tell him this multiple times a day. Cole can be so aggressive with Connor and we are at a loss at how to completely prevent it, and how to handle it. I tell Connor that if Cole understood how Connor felt when Cole hurts him, he would never do it. I welcome any suggestions you might have.

Many times, we feel like Cole is taking over our household. He is the barometer as to how we are doing. If Cole is doing well, we are doing well. If Cole is in crisis, we are in crisis. He dictates so many things. Today Cole had a tantrum because he wanted Connor to wear a short sleeve green t-shirt. We had to sneak Connor out of the house to try to get him to the YMCA with me. Just as we were about to leave, Cole ran out into the garage and demanded Connor stay. If Cole wants to play outside, Connor has to play outside. Even if Connor doesn't want to. If Cole is hungry for Campbell's Tomato Soup with the Healthy Choice green label and we don't have it, he wants to go to the store NOW and get it. Last night, he wanted to go home from Grandpa's because a marker was missing from a drawing board we brought. I literally had to distract him for 20  minutes and then sneak out the back door of my parents house so he would let me leave. I could go on and on. Every minute of every day is like this. This is life with Autism. 

Many of you probably are wondering why we don't just discipline Cole or tell him no. Believe me, we've tried... and we pay for it. I remember the first time we put Cole in a time out (against Doctors recommendations), Cole threw a toy across the room so we put him in his room for a time out. Cole was about 4 at the time. Maybe 10-15 seconds went by and we heard a huge thump. We rushed in to see that Cole had hit his head so hard against the wall that he put a 5" hole in the sheet rock. You should see Cole's walls, they are full of divots and holes. We can't keep up with the repair and actually have padding we are about to install. Doctors told us that discipline with Cole would be nearly impossible for two major reasons. Cole's brain is not capable of reasoning that because you throw a toy across the room, you have to sit in a time out. His brain can not make that connection. Cole also doesn't have what is called, "Theory of Mind". Theory of  mind is the ability to know that other people have their own minds; make their own decisions, feel their own emotions, want to do different things, etc. We try to prevent and re-direct as much as possible, but we can't always anticipate Cole's outbursts and there are times when he refuses to give up. It's an incredibly difficult way to parent. 

I apologize for venting. I have tried very hard not to make this blog a place where I say anything negative about Cole. We love him so much, so intensely and passionately. He brings us a tremendous amount of joy and an amazing perspective on life. We could not be more proud of him. But the reality is that we are human and we have a point where our walls break down. Today was one of those days. 

Pray that Cole has a better day tomorrow. I haven't told him, but we have a play date with his cousins. That should make him very happy! Hopefully he'll cooperate so Pat can enjoy a day off of work and get some time to relax (and maybe ice fish).

Happy New Year to you all. I hope you got to spend quality time with those you love.