Josh's First Campout and Solo Doctor Visit

Josh and Jason went on a boy scout campout this weekend. First you have to understand we are not a camping family! Taking a lot of time and effort to lug a bunch of stuff to some outdoor place to sleep on the ground in a tent is definitely not my idea of a good time. You add to it three children, all with major sleep issues and one that is severely disabled and it may very well be one of my worst nightmares. Maybe it is because I lived in a tent for a few months when I was a small child. Thank God I married a man that feels the same way. Now before you start lecturing me about how all children need to go camping and that it is some sort of part of growing up that is critical to their well-being, I will tell you we have discussed this and agree to take them camping one time before they leave the house as adults. Hailey and Josh also get to go camping with their grandparents. Even though that doesn't really count because they stay in a camper that is nicer than a lot of people's houses. Anyway, Jason reluctantly took his son on this boy scout campout. It was relatively uneventful other than raining most of the day on them. Josh had an awesome time and Jason agreed to take him every year. Father and son bonding at its best, but it did not change our stance on camping. It makes me thankful I have Ashley as my perfect excuse to stay home. I told Jason that since Ashley is a girl and I have to deal with every public bathroom situation for the foreseeable future; campouts are on him. They even made it through the campout with no major issues which is rare for our family. Josh did get something in his eye at the campfire that caused him some pain the next day. But he didn't tell us, he handled it himself, like every six year old would, I'm sure. He was at Awanas the following evening, his eye was hurting, he happened to see his eye doctor that attends the church where awanas is held. Josh goes to the eye doctor tells him about his issue. When I come to get him, he informs me: "My eye hurts. I talked to Dr. ****. He said give me the same eye drops Dad used when his eye hurt." Wow! I don't know whether to be concerned or impressed at his independence. The eye is much better now.

Ashley and the eggs

So Ashley was quite the handful when she was on the new medication. She was irritable and difficult, lots of self-injury, and evidently bored. She took my herbs and spices, removed the lids, and dumped some on the counter, removed contact paper from my shelf, made a mess in Josh and Hailey's room, but the main event was the eggs. She took a stick of butter and some eggs from the refridgerator. I found shells from the fridge all the way to the trampoline! And raw eggs all over the trampoline and her comforter that happened to be on the trampoline. Fun! Lots of cleaning for me! That night after I gave her a bath, I was talking to her and said, "Ashley we do not play with eggs. That is naughty." Then my non-verbal child said to me "What eggs?" I said "Ashley, I know you got into the eggs!" She said "No". I cannot even remember the last time she spoke to me before this. I didn't know whether to hug her for talking or punish her for lying! I hugged her and told her I knew she was lying.

The Broken Talker

A few weeks ago I go to school to get Ashley at the end of the day and discover a huge problem. Her para hands me her talker and tells me that Ashley smashed it to the ground thirty minutes earlier. I start to panic when I see the seven cracks across the screen and realize it is not working. This is literally been my biggest concern since we got it. It is a computer that costs over $7000. It is the only way she can communicate with us. I immediately grab my phone to call the company for a repair. They are in a different time zone and close earlier in the day. I knew they were close to closing time. The technician I usually work with was already gone for the day, so I talked to someone else. Thankfully, they had loaners available. I paid extra money to have it express mailed to me, but we were going to have to live through the next 48 hours without it. Now I know most people cannot relate to this, but this machine is a critical part of her life. I would liken it to putting tape over your child's mouth for two days and see how pleasant your life is. Except it is not the same because Ashley does not understand and she can't write us notes. I know we have only had it a little over a year, but she is very dependent on it. It has changed her life. Of course, we got her picture pointing book out and I bought her a communication app on her IPOD, but it was still very difficult. This was also when she was reacting so badly to the new medication. I know accidents happen but I had many concerns about this whole situation. First, this is a durable machine. I once dropped it on our garage floor and no damage occurred. So I really struggle with how it got broke. Second, noone called me and told me what happened. I found out when I got to the school. Now I know it was only thirty minutes, but that made the difference in my technician being gone for the day. The next day when I dropped Ashley off at school I asked about what happened again. They say Ashley was standing in line, perfectly happy, and suddenly dropped it onto a carpeted floor. Now I'm not trying to accuse anyone of lying or misrepresenting things, but I do not feel like I got the whole story. Maybe they do not even know the whole story. When I asked why they didn't call me immediately, I was told they didn't have my phone number. I have three children in that school, somebody has my phone number. The principal and coop representatives were very kind and understanding. But the people working with Ashley have taken no responsibility for the situation and just don't seem to get the gravity of it. The next day when I brought the loaner up to Ashley, I told the para that I didn't want Ashley to carry it anymore because we cannot risk it getting broken again and she argued with me. I went back to the principal and the situation was resolved, but I am just not happy how the whole thing has been handled. I know part of the problem is her teacher is not in the classroom right now due to other circumstances. I am positive if she had been there it would have been handled much more appropriately. I understand working in this classroom can be a difficult job and that people make mistakes. But the bottom line is this mistake cost me several hundred dollars, impacted Ashley greatly, and the people responsible for her and thus the talker just didn't seem to get it or care. I just put my kids back into school after several years of home schooling. The reason we chose to homeschool was because of the many mistakes at Ashley's expense and because she was being abused. We felt comfortable putting her back in school because it was a completely different group of people, a wonderful teacher, and the program seemed to be stable. But now I am very concerned about whether the school can really handle my child. The principal and the coop have been very kind and concerned, but can they look out for Ashley's best interest?

Hailey's Bike Accident

So Hailey had an accident on her bike the other day. It wasn't serious, but just one of those weird events. She was riding down to her friend's house and crashed. She flipped over her handlebars and scraped up her knees, elbows, side, and hand pretty good. Luckily, Jason was driving by at that moment and stopped to comfort her. Of course, she still wanted to continue on to her friend's house, so she went there instead of home. Now the funny thing is: her friend lives maybe a block from us. I can see their house from ours! Jason called me and told me the story. I called the friends to make sure she was okay and didn't need to come home. She didn't want to come home; her friend's dad was getting her all bandaged up, after all, he is a doctor (eye doctor, but obviously way more knowledgeable about these things than me). A few minutes later she calls because it is time to come home(she only had 30 minutes to play before this all happened) and now she is too sore to walk or ride home and she wants me to come get her. Of, course, I happen to be home alone with Ashley. So I actually have to get Ashley and all the stuff she deems necessary for the trip, she doesn't know how long we'll be gone, and drive down the road to a house I can see to pick up my minorly injured eight year old. Never a dull moment!

Defining Moments

You often hear people say, "this is the most important day of my life", referring to some occasion, perhaps a wedding, birth of a child, baptism, etc. And while these are all important and memorable events in a lifetime, I think it would be hard to pinpoint the most important day of a lifetime, even at the end of your life. I believe some of the most important days in my life occurred without my even knowing. Possibly, looking back, I realized it later. There are moments or maybe periods of time that are so life altering, that we are completely changed. Our life takes on a new direction that we never anticipated. When we woke up that day we didn't know that something was going to occur that would change us so completely. Maybe when we went to bed that night we still didn't realize that our life had been dramatically impacted. For some people it may take years or the rest of their life for the full impact to take place and for them to realize it. I know one of the most defining moment of my life thus far was when we realized Ashley had autism. I'm not even sure what day it was, but at the moment that we completely processed that information, our lives were changed. We were forced to let go of a lot of dreams and goals. They were replaced by a completely different life than we could ever imagine. Ten years ago I would have never been able to predict the things we have gone through and where we are now. It has defined us spiritually, emotionally, financially, and every possible way you can imagine. It has impacted our relationship with God, career choices, friendships, and relationships with family members. I can't think of any part of our life it has not changed. It devastates me to see my daughter suffer, but at the same time I love my life and family. And without autism this is not the life I would have. I guess there is a reason we don't see those moments coming. If we did we would probably run from them and in the process miss so many things that God has planned for us to experience.

Sleep or Happiness - which would you choose?

So Ashley has done so well on the enzymes and we are so excited about the changes in almost every area of her life - except one - she still doesn't sleep. After another trip to the doctor, we decided to try a new medicine, an anti-depressant that helps with sleep. Now we know we have to start with tiny doses and work our way up or Ashley will react. So the first night we gave her 1/4 of the dose and everything was great. She went to sleep easily and stayed asleep. The next two nights it made her hyper. So I called the doctor and we decided to push to the actual full dose. Now her sleep is much better, however every other night she gets up at 5:00 in the morning. Now I know my dad would have considered that a good wake up time, but I consider it the middle of the night. And to top it all off she is highly cranky a lot of the day and very aggressive at school this past week. Am I really going to have to choose between sleep and happiness for my child??? I have another call into the doctor, hopefully he is prepared with a great plan!

Hailey is growing up!

We had one of those nights last night! All three of the kids got up in the middle of the night and woke me up for various reasons. Although the sleep has been much better, I'm not sure if we will ever get completely past these nights. Hopefully they will just become less often. Needless to say I was not that enthusiastic about getting up and getting everybody ready for school. When I finally did stumble out of bed - only slightly late. I immediately ran into Hailey in the kitchen completely dressed and eating her breakfast. She had the supplies next to her for me to fix her hair. She had already done her chores and taken her medicine. She was very proud of herself, as was I. Her biggest concern was had she been quiet enough to not wake anybody. Now I know this was just one day and tomorrow I will probably have to drag her out of bed or remind her to get her stuff done. But today I am impressed with my eight year old daughter. And today we had time for a full devotional before school and Josh and Hailey left for school thirty minutes before it would start. It also gives me hope that if she can do it once, eventually she will do it daily with no reminders The only problem is I was still responsible for Ashley and myself and we were a little late.

Ashley and Digestive Enzymes

Years ago when we first started noticing concerns with Ashley, we immediately started looking for any treatment we could find. I was constantly researching autism and the many different treatments out there. I have heard of hundreds of different treatments over the years. They include dietary, medical, homeopathic, and educational interventions. There is always something that has helped some child with autism somewhere. We desperately tried over forty different treatments with Ashley in a three year period. Some seemed to help slightly and some made things worse. They were all expensive and most required huge sacrifice on our part or for Ashley. It always seemed worth any cost if it had a chance of helping us to get our baby back. I have read books and talked to other parents who have seen amazing success with some of these treatments. For us and Ashley that miracle never came. But a different miracle came we learned to accept Ashley and our life as it was. We have been content and happy with our life and our family, even though it includes a child with severe autism. We stopped almost all the treatments that were experimental and focused on her education. But every few months I get a call, letter, or email from someone talking about a new treatment. We always listen to it and possibly research it, but now we have a criteria we use before we jump on it. The criteria: first we pray, then we consider the source, we research it further and discuss it with professionals. Then after all of that, if it is not going to involve a huge lifestyle change and if it is affordable in our budget without any debt; we will try it. In the last five years nothing has met our criteria; so we have not tried any different or experimental treatments. However a couple of months ago we received information on digestive enzymes that fit our criteria, so we decided to give it a try. I didn't have a lot of hope that it would be effective because we have been down this road before, many times, and have been badly burned. But we started the enzymes a month ago and to our amazement, they seem to be greatly helping. We started out giving her an enzymes a couple of times a day before she ate. Now we are giving her enzymes before she eats anything. She is so much happier than she has been in years. She is calmer and more focused. She is having very few meltdowns and her self-injury has significantly decreased. Everybody, who spends any time with her, has noticed a remarkable difference. She is more affectionate, her eye contact is better, she is more verbal, and using her talker more. The only thing that has not improved is her sleep. We are so excited and praise God for such wonderful changes!