Time to Love

I read a blog post the other day on ADHD that has gotten me thinking. One thing she said was that because she choose to medicate her child, people didn't resent her or her son for his behavior. I started thinking back over the years of raising Jesse and people reactions to him.So many times he has been treated poorly by others because of his actions. This is by both adults and children. It hasn't been just when he was on his medication or off, it hasn't really matter. He has been treated the same. He has kids call him names, adults roll their eyes at him when he wants to sit by him, adults who refuse or resent working with him, children who make fun of his siblings because of him, adults and children talk bad about him to others, and the list goes on and on.

My son is not a bad child. He is not a kid who will act out just to make you mad. He does not ignore you just because. He is not rude to you because he doesn't like you. He IS a boy with disabilities! He IS a boy who is struggling to make it in a world where he is looked down upon. He IS a boy with a heart of gold if you are willing to take the time to see it. He IS an amazing person with a sweet testimony of life and the gospel.Jesse has ADHD and Aspergers Syndrome. This means that his brain is wired differently than yours and mine resulting in him processing information differently. For example he does not connect the fact that he can't just say whatever is on his mind, especially if it is a rude thought. To him it doesn't seem wrong. For him he struggles greatly with impulse control, understanding consequences, hyperactivity, knowing how to appropriately interact with others, and many other facets of daily life. So often because it is not a readily visible disability, people think he is just a bad kid. Would you tell a child with a physical handicap the same thing? Of course not. People sympathize with them and love them despite the disability. The same should be true with children with mental disabilities.

I know more than anyone what Jesse is like. 95% of the time Jesse is with me or another member of the family. Many times we are asked to be present where ever Jesse is to take care of him. This is a double edged sword for me. I love my son and will always be there for him. But it also bothers me that when people don't take the time it takes to get to know Jesse to the point that they know how to best deal with him. It seems easier to just look at his problems and resent him for it than to take the extra time to get to know him. I can guarantee you that no one has seen his worst or his best other than me and yes that includes Robert and the other kids.

I am so very grateful for those who have taken the time to love and care for my son. There are some great friends who without question willing let Jesse come play or stay at their house for a few hours. That time means more to him than you can ever know. He truly loves and cherishes these people who let him into their heart, even if he is unable to tell them. These bright rays of sunshine light my sons life as well as my own.

It is my ever present hope that people will take the time to get to know my son. Yes it will be a rocky road, full of unpleasant times. But in the end it will be a tremendous blessing to him and others. He is growing and improving constantly. Having him home from school has been one of the best things we have ever done for him. He works a couple of times a week with an amazing PSR worker is strives to help him survive socially. He continues with counseling monthly to help us all find what is best for him. He tries to incorporate all he learns to be better and has come a long way. However he will most likely always have problems anytime there are changes, struggle with controlling his impulses, and get overstimulated easily in social situations causing him to act out. Thank you to everyone who helps Jesse to become the best person he can. Thank you for the dedication you have shown our son and your patience and love toward him. It is a blessing to us to have the privilege to raise him, and we are grateful for all the help you give to us.

The Ups and Downs of Life

So this last week has been very challenging with Jesse. In many ways it isn't unexpected because he always struggled with school around the middle of the year, but it makes for some challenging days dealing with it all day, every day.

For example our day on Monday was horrid school wise. It took him 3 hours in the morning to do math, his best subject. He just was so unfocused and distracted. After that I got him through a few short lessons like spelling before lunch. He then left for a few hours with his PSR worker. When he came back it took him 7 hours to complete a reading test mainly because it had several short answer questions and a short essay and he HATES writing. We finally finished the test around 10 at night. I had had it and was very frustrated, but the rule is if he is being defiant he has to finish his school work that day no matter how late. We finally finished all his work at 11:45 at night, close to 15 hours after we first started in the morning. The good part about it was that in the past he would usually be belligerent in his defiance with school work, while that he he just sat and didn't work. I guess you take the good however small.

Several others days have been like that this week, just not the that extreme. Last week however, he did amazing every day in school. I guess so many days we could just find and even playing field so that I could know what to expect. I hate guessing what kind of a day it will be. I know this will never happen, but it is nice to dream I guess.

IDVA for Jesse

Well after much thought and struggling I have decided to enroll Jesse in the Idaho Virtual Academy. There are so many pros and cons to this decision, that it has been hard to make. My main reasons for making the change are for social. As he gets older the teasing that he faces will become more aggressive and mean spirited. This teasing them sends him into tantrums where he becomes violent to those around him. Having him at home for school will eliminate the majority of this teasing and help us to control his social situations.

Also Jesse struggles so much with change. By having him home he will no longer have to feel out of control when there is a substitute, a class party, etc. We will be able to structure his day so that his work is broken up throughout the day and interspersed with down time to help motivate him in his work. This has worked well this summer and we plan to continue a similar schedule for the school year.

When I asked Jesse about it he first said it sounded silly, but as I explained it he became excited and said it would be perfect. I am hoping that I will be able to handle this change and that things will go well with it. I figure if it doesn't work out we can also put him back at Wilson. In the very least I will not have to be called to school to help with him, since he will be with me already. That alone will relieve some stress since those calls and subsequent trips to the school are very emotionally draining. However, they will be replaced other stresses of working with Jesse at home.

Jesse has also finally qualified for a PSR (psycho-social rehab) worker who is starting this week with him. She will spend five hours a week helping Jesse to deal with social situations. I am hoping that we will begin to see some great results for him!

Welcome to Holland

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A friend of mine sent this to me last week. The first time I read it I bawled because it is so true. As I read it again this morning, I again cried as today has already been a trying day with Jesse. I wanted to share this with all of you as it really touched me. I definately have my days where I still long for Italy and other days where I am able to enjoy being in Holland. Thank you so much Nina for helping to find the words for the many feelings I have.

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

ADHD or Aspergers

Well the last month with Jesse's psychologist has involved some difficult information. A few weeks ago we talked about the possibility of later down the road of facing some early onset bi-polar because of his extreme mood swings. There is a family history of bi-polar on my side of the family (my sister, uncle, and cousins) so it is not a surprise, but still very scary.

On Friday at his session Jesse was exhibiting some classic symptoms of Aspergers syndrome. AS is a disorder that falls on the autism spectrum. This has always been a condition that we have suspected. His counselor believes that he does have AS although we are keeping his ADHD diagnosis for now. This is because his treatment will remain the same as we are addressing his current needs. Part of the problem is that Jesse exhibits many symptoms of various behavioral/psychological disorders. Now it is time to research AS to see how we can further help Jesse.