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.

Dr. Jekyll and Mr. Hyde- Life with ADHD

So today was another trying day with Jesse. We have had more of these lately and it is very discouraging. He had a major melt down at school and I had to go pick him up. I tried to get him under control so he could stay in school and let him know that he would lose going to the Pinewood Derby if he couldn't get it together. Well after multiple choices and looking like he had it together he started right back downhill and ended up being carrying out of the school (twice). It was not good. After it took forever. However, when he finally deescalated and we were able to get him in the car and go home he was a completely different person. Gone was the yelling, kicking, screaming, defiant person and here was the sweet., calm, ready to please person in his place.

Such is life with ADHD. It seems like you can go from being calm and happy to violent and angry and back to calm within hours or minutes of each other. Not to mention the impulsively, hyperactivity, lack of focus, and defiance. Some days are easy going with no problems while others are a roller coaster of ups and downs and everything in between. It amazes me that there are still people who believe that ADHD is not a real disorder and that it is just a badly behaved child. It is hard for some to understand that mental disorders can be just as trying as physical ones, but often aren't as accepted. I wish they could come and see my son when he is struggling. To see him as if he has no control over his actions and is just responding at the very root instinct. To see him wanting so much to be good, but just not able to bring things under control. To see him struggle with relationships because he can't figure out the social situations and how to react in them.

I love my son so much and worry so much for him. Here soon we will most likely be getting a PSR (psycho-social rehab) worker for Jesse who will work with him a couple times a week in our home and community to try to help him some more. I hope we can find what Jesse needs to be successful in life. As it is, he seems to struggle more and more the older he gets. I am thankful for the strength that Heavenly Father gives us when we are at our whit's end in things. I am thankful for the chance we have to raise Jesse and help guide him through his life.

The Side I Wish All Could See

This morning Jesse woke up early and got ready for school without any fighting. So while he was eating breakfast, I went and got my shower. When I got out he came in and told me he had gotten my breakfast for me. At first I was a little worried because I usually don't eat what most of the family eats for breakfast. So I asked him what he made for me. He told me he got out one of my yogurts and my bagel (English muffin) and toasted it but he didn't butter it because the only butter he saw wasn't opened. I could tell he put a lot of thought into getting my breakfast because he only got out things I would eat and the butter he is referring to is the butter spray I use instead of regular butter that the family uses.

This is a side of Jesse that I wish everyone were able to see. He has such an amazing heart and is really caring and loving. So often all people see of him is the rambunctious, aggressive, hyper child who is always in trouble. I worry so much for him and his future. I worry that he will always be judged by his negative actions that he struggles to control and that people won't take the time it takes to really see inside him. He has such a love for Heavenly Father and Jesus, but struggles expressing it as most people do. I truly love Jesse and love how willing he is to be of service to us!

Day 2

Day 2 of all being quiet by 9:30! YIPPEEEEEEEEE! We keep this up and I won't know what to do with myself. I feel like jumping for joy. It is so funny because it is almost like an on off switch. One minute you hear his various playing noises and the next it is silence and he is out. I am loving this Melatonin stuff!

A Miracle??

I just have to say that I think I may have just found myself a miracle pill. Night time around our home is horrid. When Jesse comes off his meds, he gets very hyper and can't sleep until about 11:00 at night. His psychologist recommended asking his pediatrician about using Melatonin for him, so I did today. I gave it to him about 8:45 tonight and then sent the kids to bed. I heard the typical playing that happens every night. About 9:15 Jesse comes out of his room, hands me the bottle and says "See mom no medicine helps me go to sleep." I told him just to go to bed. He finally did and within 5 minutes the house was quiet. THIS NEVER HAPPENS!! There are many times I still hear him as I am going to sleep. I went and checked on him and he was out at about 9:30! I am sitting here now basking in the quiet of our house and hoping that we have found something to truly help Jesse.

The Difficult Decisions of Parents

Our son Jesse has lived with many different medical problems throughout his life. Throughout this past year we have spent lot of time with doctors trying to help find a solution to some of his problems. They finally decided to do some psychological testing to see if there was a behavioral condition underlying some of the medical problems. The testing showed that he has ADHD. We then were left with the decisions of medication. Having seen other members of my family struggle with medication for psychological disorders, I was very nervous to medicate, but also knew that my son was really struggling. We finally decided to medicate him and he started on Sunday. We saw a difference that day. He was able to sit through church without any major problems for the first time that I can remember. He had a hard time sleeping that night, but came home Monday saying how good of a day he had. He was so happy that he hadn't gotten in trouble at school. He again had a hard time sleeping at night. He has now taken the medication for a few days and seems so much calmer. I have seen differences in areas I hadn't thought of as well. He has been very into drawing, writing (which h hated before),and coloring. I was looking at the pictures he colored last night and was really impressed. His coloring has always been sloppy with weird colors (people being green with blue hair for example) but the pictures he colored yesterday looked "normal". I know we still have a long road ahead with fine tuning his medication, but the results so far are great (except for the insomnia which we are working on).