Thursday, December 31, 2009

2009 Wrap Up.......A Mom's Perspective

This has been a big year for us on the Jared front.

Jared got his PDD-NOS diagnosis. He was also diagnosed with an anxiety disorder and the ADHD diagnosis we already had was upgraded. Diagnosis gave us a name to put behind the challenges we had faced for Jared's whole existence.

Jared began to cope much better with his surroundings. When he started at his new school last fall it was like he fell off a cliff. He became some one I didn't know. It was frightening. I am glad it all happened the way it did though. If he had not completely lost it, we may not be where we are now.

With proper medication and behavior modification in place, Jared (the one I knew) came back to us. He has done remarkably well. His resilience amazes me. I see him trying. It's not always easy, but he tries.

I see him trying to stay calm and when he does start getting stressed he is able to calm himself with coaching from his teacher or his parents. He is trying not to talk so much out of turn. His melt downs have decreased dramatically. They still happen, but we can usually stop them before we reach the point of no return.

He still gets obsessed about things, but it's not as severe as it was a year ago. His imaginary friends are gone. He's less frustrated.

This is a link to a post I wrote this fall. It reflects the progress Jared has made this past year.


To look back and see where we have come from fills me with joy. Life is not perfect. Stuff still happens and some days downright stink. I try to take those days for what they are.....bad days. The fact of the matter is that Jared had ASD. He had it yesterday. He has it today. He will have it tomorrow. He is not going to wake up one day and it be gone. We are just going day by day and hopefully learning something new and working on them.

2010 will bring new challenges. Jared will turn eleven. He will start middle school. He is inching ever so close to teenagedom. As he masters some skills, he is facing new challenges to overcome.

And we soldier on.


Sunday, December 27, 2009

Christmas

Christmas is just one of those days that brings the best or the worst out of people. Sometimes both....and that is usually the case..... depending on the time of day.

Jared did great. Christmas is so overwhelming with all that is Santa and extended family members. There are new things everywhere and everything has to be explored and played with immediately.
One of Jared's best presents this year was a left handed bass guitar from his Aunt Diane. He's been wanting one for a while and I was really hoping he would get one. He has a talent for the musical and with his other challenges in life we really want to guide him into activities and skills that others will find more interesting and distinguish him from the pack for reasons other than the ASD. He's a fast study. James, our oldest, is teaching him and it is going well so far....two days. James is amazed at what Jared has accomplished already and Jared thinks James is a cool teacher. Win. Win.

We lasted until the late afternoon and life started to unravel a bit. Jackson was done by that time too. We enjoyed Christmas dinner at my parent's house and when we were done with dessert, it was time to get back to our own home. Things were slowly falling apart. It was okay though. It was a day of mostly sharing and playing and that is always a good thing.

Jared often likes to play alone in his room. It bothers me at times, especially when the rest of the family is doing something together and he chooses not to participate. But I found him that night sleeping with a bag of candy.

Seems like a classic end of Christmas day shot.

Sunday, December 20, 2009

The Wink

Last year Jared learned the truth about Santa Clause. He's very real. He is in each one of us. But Santa is a happy secret because the spirit of Santa is so much fun and we don't want to spoil it for those waiting for the cookies to be eaten and the milk to be consumed.

This year Jared is flip flopping from his need to educate his little brother Jackson that Santa is not real to the preceding paragraph in this blog. It's been challenging to keep him quiet and let Jackson's whole Santa world stay in tact.

On Friday, Jared couldn't stop saying enough about the fraud Santa is. He saw my look. He knows that look. I can part the waters with my look. He stopped.

On Saturday, I walked into a discussion Jared was having with Jackson about what Santa would leave for each of them on Christmas Eve. Upon seeing me enter the room, Jared looked at me and gave me a huge, "discreet", wink.

Yeah, Jackson may not be a believer much longer.

Wednesday, December 16, 2009

Trying to Get Started

My laptop died a few weeks back. That was my blogging tool and I have not been doing the work I set out to do.

I thought I would post something I wrote last year at this time about our journey with Jared. It certainly was not the beginning, but a significant turning point in our lives.

I've been away from the blog lately. Life has been full of stress to the point where I wasn't sure I could get out of bed to face the world. But I am up and clothed and though I am still not completely standing on solid ground, I am moving in a forward direction.

I have a wonderful little boy. His name is Jared. What sets him apart from his brothers? Well for one, he is the epitome of the "bouncing baby boy". He is still bouncing at nine years of age. When I would describe mothering him as a small child I would say it was like having a first child all over again. He is my third. All the skills I had learned up to that point seemed to fly out the window. Positive reinforcement had spotty effects. Time outs didn't work. Taking away toys didn't work. A stern warning was quickly forgotten if it even registered at all. He's not afraid to call someone twice his size a bully, but he has a great fear of elevators. He can't sit long enough to eat a meal, but he can take his time and try to teach a two year old how to dribble a basketball. When he was young I would ask him a question and his reply would be an answer to a question I asked two weeks earlier.

Jared is creative. He loves an audience. He loves video games and computers. He loves to sing, but not in front of anyone. He loves Lego and when he is in his creating zone he will disappear for 5 hours with no breaks or meals (and don't dare come into his room and bother him) until his masterpiece is complete.

Socially he is awkward. He has little concept of personal space and in kindergarten he would unnerve his classmates when he came too close to them to talk, which was all the time. And he talks and talks and talks. Children don't know how to relate to him and so when he is invited to a birthday party it is a major deal.

Jared only focuses of things of interest to him at any particular time. His ability to focus on other things is sketchy. Getting the "must jobs" of life done are a huge struggle.

He is easily confused. Life must be laid out very clearly for him. Rules, instructions, must be repeated numerous times. There always needs to be a designated person in charge. If these things are not happening, anxiety kicks in.

Things are much more difficult for Jared to accomplish than it is for any of his brothers. He is an intelligent, bright, thinking being. It's hard to expose that to the world. It's trapped inside his body continually trying to escape to the light.

Jared has ADHD and anxiety. The lucky lad seemed to get the right mix of genetics and won the lottery. Life for him is like watching 5 different TV shows on 5 different TVs at the same time and then being expected to write an exam answering questions about all 5 shows he watched simultaneously.

A large part of our move to Alberta was for him. We had heard that education funding in this province allowed for more intervention for kids with challenges. We had great teachers in BC, but education funding did not provide support for kids like Jared. He, his parents, and his educators were left to their own devices. Any help we did seek was out of pocket and expensive. Indeed a psychological assessment that was requested 2 years ago in BC was given to Jared within 3 weeks of school starting here. With that assessment he was able to receive the help of an educational assistant.

But something else happened when we moved here and school started. Jared became more anxious. He started withdrawing in many ways. He would no longer play outside at recess with the other children. He didn't like to go out for dinner any more. He wasn't able to be in large groups. He was fighting to sit on the sidelines.

We began to see a psychiatrist early this fall and we talked about the problems Jared was having. We played around with his medications. I had been using reward systems for encouragement. I was in constant communication with his teacher, who by the way, is a total answer to prayer. Nothing was working.

Now he is at a hospital program and he has been there for almost 2 weeks. We were on a waiting list to get in. They called in the afternoon with news that a bed was available. Within 3 hours he was there and Sean and I went home without him. He comes home on the weekends and we visit him every night. The purpose of this program is to observe the children 24 hours a day and diagnose and identify behaviors. They work on behavior modification and when necessary figure out the right medications to use and therapy.

One thing we found was that the ADHD medication Jared has been on for quite some time really wasn't working for him. They found no real difference with him on or off. They are trying something else and so far they seem positive about it. He is also on an anti anxiety medication until he can learn to deal with his responses to those things that cause him stress.

We miss him around here. Our house is empty without him. It is hard to let go of your child and put him into a less than homey environment in the care of strangers. It's hard to not feel guilt and a sense of failure that as a mother you could not fix this for your child.

This past Friday was when I learned that our doctor wanted to keep him for a month. The reasons at that time were that some of his medications took that long to kick in and that Jared
was a bit of a mystery to them. He showed symptoms of a few different disorders, but could not be firmly diagnosed with anything. They had not seen a boy like Jared in a long time. We were asked for family mental health histories. I was feeling kicked in the stomach. I lost my footing.

Needless to say, I was a wreck for 4 days. I could hardly function and when I did I was exhausted. It had been a tough week not having Jared around and Jordan rolled and sprained his ankle (we went to the hospital for that too) and was on crutches. I didn't think I was going to be able to move. Everyone in this house has now seen me in tears this past weekend and even the boys have been worried about me. I couldn't hide it. I couldn't trust my own mothering skills. I didn't trust my judgement or my ability to make correct observations. I think I hit that breaking point.

Taking Jared back on Monday was the hardest thing to do. I knew he needed to go, but all I wanted to do was keep him home and hide him and take care of him.

Monday was a difficult day for him. On Tuesday they increased his meds and started a behavior modification plan that was an instant success. I sneaked in this morning to say hello and the nurse was just excited to tell me that the morning went so well. Jared got ready all on his own and happily without constant reminding and was ready for school 2o minutes early. He is going to hospital school.

So I am feeling better today. Our evening visits have been positive. The hospital feedback has been positive. I am hoping I don't get kicked in the stomach again on Friday. But it doesn't matter. It's not about me. It's about Jared.

Once upon a time I was one of those anti ADHD diagnosis people. I believed that we were diagnosing too many and unnecessarily over medicating our youth. Then God gave me Jared and my world changed. I judge less. He is a gift to me and to anyone who comes in contact with him. He is here to teach us a lesson or two about life. He has taught me that resilience can come from any hardship this life offers. He has taught me that even though life can be a challenge you can still be cheerful. He has taught me that every individual has the strength to overcome.

He is my hero