An example to follow...

If you read my other blog than you know that my dad has recently been diagnosed with Colon Cancer has been in and out of the hospital several times. He was given a colostomy bag in the hospital and told that it would be a permanent situation. Upon coming home and trying to live life normally we discovered that the colostomy bag was too small and he needed to be fit for one that would fit him. Because it was too small there were many challenges that came along with it. It was very frustrating for my dad to have to deal with this learning curve.

Now I know you are saying I thought this blog is about your son, why are you using this forum to tell us about your dad? Here is why...

My family has always been so supportive when my Chameleon has had challenges that we have had to overcome. They understand that it has not been an easy road for us and try to be there for us in any way that they can, even if all that they can do is give us words of encouragement. My family is great at supporting and encouraging each other in a crisis or emergency situation. My Aunt Beanie has been one of those family members that has a big heart for my son and what we go through. She often sends me messages to let me know that the family is supporting us with prayer.

Several weeks ago we were in Florida (where the family lives) trying to help out where and when we could. My Aunt explained to me that my dad was having a rough day with the colostomy bag and was getting very discouraged. She told me that she explained to my dad that if his grandson could do it so could he. She told him that he should look to my son as his role model during this situation. It is very sweet to think that my son's way of life could be an encouragement, especially at a very difficult time in his grandfather's life.

I told my son that my Aunt had told his "Grump" to look to him as a role model. His 9 year old response was this... "Um... I don't think that is such a good idea mom. He really shouldn't be running and climbing trees and stuff right now." I love it! It is the Chameleon part of him that made him think only of his "normal" abilities rather than the differences that he and "Grump" now share with each other and no one else.

Watchin' the clock

A couple of weeks ago I bought Karston a watch. The reason is that we wanted to be able to set the alarm so that he can better know how to keep to his own schedule.

It has worked nicely. Everytime it goes off he knows to go to the bathroom and I set it again for the next time. As long as I am around to set the watch he does very well. Our next step is to teach him how to set the watch and then go on his own. He is growing up fast and taking so much more responsibility for himself. I am so proud of him. It is so nice to finally be able to see that one day he will be able to completely care for himself and not have to rely only on mom and dad. We now set his watch for his cath. every two hours and also for his "potty meds" that he does for 30 min. daily. This couldn't have come at a better time, since I am now in Florida trying to help out with my dad (has been in hospital with kidney problems and Cancer of the colon.) I am not always the adult athority with him and the watchis helping other family memebers to be able to also care for him.

The watch has helped in other ways too. When he first got the watch he was still in school. I got a note home from his teacher saying that she was really pleased with how well his watch has helped him to stay on task with his classroom assignments. When I asked Karston about this he told me that he timed himself to see how long it would take him to do the work. His watch also has a stop watch on it and he is loving that feature of it.

His younger brother also got a similar watch, and is loving that he not only has what his brother has but that he is also able to check the time. He constantly wants to know what time we will be leaving here, or what time will be going there, or what time will be doing this or what time will we be... etc. I am proud of both of my little buddies for growing up but now that we are timing the whole growing up process I hope that it slows down and they are not teenagers before I am ready!

Growing Pains bring Mature fruit...

The other day I sat down and cried...

I got a call at 10:00am. The school secretary told me that I needed to bring Karston a change of clothes because he had an accident. I told her that I don't have a car at home, but would try to figure something out. I was expecting one of my friends to bring her 2yr old to my house within the hour so that I could babysit. Frantically, I called my friend and asked her to come a little early so that she could run me up to the school to take care of Karston. She agreed and told me that she would stay at my house with the girls and let me take her car. What a great friend.

I got another call from the school... She said that they found some shorts for Karston to put on, but he told them that he needs a shower and he won't come out of the bathroom. I told her I would be there shortly...

I got to the school and stepped into the bathroom to find Karston covered in fecal matter, from his ribs down to his toes. The floor was covered and his clothes were piled up in a brown mess on the floor. I was near tears but knew that I couldn't cry in front of him and the school staff. I had him put his snow pants on and gathered up his clothes into a bag. The staff said they would clean the bathroom and I brought him home right away. He showered off and got clean clothes on and stayed home the rest of the day.

I haven't seen a mess like that since before Karston started doing a suppository everymorning. So our first thought was that he didn't do it when he said that he did. I spoke to him about it and he was insistant that he did do it. So my other thought is that he may not have stayed on the potty long enough coupled with the stomach bug that his little sister may have passed on to him.

Karston is growing up and with that growth he has decided to be a bit more
independent and do things for himself. This includes getting ready for school in the mornings. He no longer wants his mom or dad coming to his room to get him up, he wants to set his alarm and do it himself. That is the reason he may have not done the suppository long enough that morning. We have come up with a solution of doing the suppository at night before bed and that gives him the morning to do for himself.

Each time that we go through one of these new growing periods, we have to go through some trial and error of how that is going to work with his challenges. I know that each time is a good sign of him growing and maturing, but it also brings frustration and emotional conflicts. We are figuring this out and one day he will be totally on his own and self sufficient and it will be all worth it. On the one hand it is hard for me to let him grow into such a mature boy, but on the other hand I am so relieved to see that one day he will no longer NEED my help.

It's the brace again!

This has be shortest time that it has taken for Karston's brace to brake. Yep, it happened again. This time it is not cracked or broken in a way that affected by how active he can be. This time it seems that the plastic has a huge dent in it right on the edge next to his ankle. There is a strap that comes across his foot at that same place and I am wondering if the pressure of the strap, the shoe and how active Karston can be might be the issue this time. This strap is a new feature that was added with this new brace. Well, this time I was able to get on in touch with the orthotist within a day of us noticing it. The problem is that the Orthotist has left the country and won't be back for a few weeks.

Karston can't wear the brace right now because the dent has cut into his foot. I just worry about how active he is without the brace. We must get this figured out!

IEP?

We had a meeting at the school this week to determine whether or not an Individualized Education Program or I.E.P was needed for Karston and whether or not he may have a "learning disability."

As a side note... Heath and I are very much against labeling children and doing unnecessary programs for children that may not need it. We will never medicate Karston due to any learning disability and we did not pursue this lightly. We noticed that our son was having a hard time with a few of his subjects and mainly wanted to find out the best way to help him learn better.

During this meeting we discussed conversations that the school Psychologist, schools Social Worker, and the Physical and Occupational Therapist have had with him, his teacher, and with us his parents. We were all basically saying the same thing. He is a great kid that excels in reading, but struggles with Math. He has trouble focusing on task and is frustrated easily. Heath and I both felt that there were struggles that he was having that we ourselves could relate to. I just kept thinking, 'I am so glad that he is not here and that not every one's abilities and disabilities are scrutinized so closely.'

This post could very easily become to long to read in one sitting so, instead of telling you everything that was said in this meeting, I will tell you the result that we all came to and then in several other post I will tell of some of the details.

It was determined that Karston could benefit from an I.E.P., but that he is not going to be taken out of class for this. There is a resource teacher in the class room that helps to assist with the kids that are in need of a little extra help (Karston is not the only one.) She will now be helping Karston out a little more with staying on task and one on one help with Math. The Social Worker will also be coming into the classroom to help out and assist Karston in any way necessary. The Physical Therapist will be observing him in Gym class, and in the hallways. Karston will not notice much a difference in his routine at school, but will be getting enough help that he will hopefully notice a difference in his own performance. We are pleased that the school does not put labels such as Special Education on the children. They work with them within the classroom that these children are already a part of and do not disrupt their already learning process.

Lastly, they did have a solution for helping him to focus in class more. It was determined that he does not sit still very well and has a need for moving. They have now given him a "sit and wiggle." The sit and wiggle is seat, on top of his seat that allows him to wiggle around when needed. The only rule is to try and not disrupt the other children sitting nearby. The theory is that if he is allowed to wiggle in small intervals through out the day, then he will be able to focus on the work that is being presented during class time a bit better. He LOVES this new seat of his. I will try and have him tell you all about it soon.

Stay tuned for more details about how he is doing in school....

Test Results

So our Test did not go so well.

He went to his friend's house and got so excited that he immediatley started playing and forgot all of his responsibility. He did come home wet, but had played outside most of the time so his snow pants covered any embarrasement that could have come.

We have all talked. He realizes the importance of taking the responsibility for himself and we understand that this is still a process and we are just getting started.

Test... 1 2... Test

Today is a true chameleon Test.

When Karston's friend from school called the other day to ask if Karston could come to his house to play, I held my breath as I said yes. This is something that Heath and I have been concerned about for a while now. We have just gotten to the point with Karston that we all know the routine and help remind him of when he needs to cath. or take medicine. To send him straight from school to a friend's house for several hours is going to be a test for him to see if he can remember what to do when. My heart feels heavy just thinking about what might happen if he forgets.

I will be on pins and needles until he makes it home dry and happy. If all goes well, we may be able to trust him to do this more and then eventually have fun sleep overs. So with my fingers crossed, my heart in prayer and my mind full of worry, I have to wait

I will let you know when the test results come in...