Josh Defends A Child With Autism

The other day when Josh was at school he discovered a group of children making fun of a boy with autism. The boy's pants had fallen down and the other kids were laughing at him. Josh immediately told all the kids that the boy had autism and that autistic people don't always understand things like pulling up their pants. His lecture ended something like: he is like my sister and I better never catch you making fun of my sister. They promised they wouldn't. There are times it makes me sad that my children are so painfully aware of autism and people making fun. But times like that, it makes me proud that they are so aware and have the courage to stand up for what is right. As much as I would love to take the pain away, I wouldn't want to take the empathy it has created away.

Anniversary Thoughts

This year my husband and I have been married 13 years. We actually lived together for 3 years before that and part of me wants credit for those years- we put a lot of effort into them. They were probably harder than the first couple of years of marriage. But I guess to have them count we should have just gotten married, that was a different lifetime ago. In some ways it seems like it has been a really long time, but in other ways the years have gone very quickly. Life hasn't turned out quite the way I planned. God has added his own little twists to keep me from getting bored, I guess. I planned to be a stay at home mom, but I thought I would have "normal" kids and eventually go back to work. Now I know everyone thinks their kids are abnormal, but I have been around a lot of kids and mine really are - I have doctors who agree with me. I never thought I would live in a little town, home school, or deal with the many issues that came with my kids. All in all I love my life, my family, and I would do it all again. I married a wonderful man and we have created an interesting family. I look forward to many more years of marriage and a whole lot more stories to tell.

Life is a Journey not a Destination

I am a very goal oriented person. I set a goal and I reach it and then I set a new goal and I reach it. That is how I have lived my whole life. I wanted to graduate college, get married, get a job, have children, etc. I have done all those things, acheiving each goal with single minded purpose. I have had more than one person say, "stop and smell the roses" "enjoy life, have some fun". I know it is good to be organized and have goals, but I also know I should enjoy life more and have fun. Instead of seeing the fun as getting in the way of achieving the goal, I need to see it as part of achieving the goal and as part of being a person. Many important things in life cannot be summed up in a goal. Loving your children and forming relationships with other people aren't goals. But those things are much more important than many of the goals I set for myself. The Bible tells us to live for today and let tomorrow take care of itself. I'm trying to make that my new "goal".

Ashley's Education

Sometimes it feels as if things just won't go right for Ashley. Her education has been a mess from the very beginning. She started in school at the age of 3. She was placed in a preschool program that was not capable of meeting her needs. Although the teacher was very sweet and knowledgeable, she was overwhelmed with several highly disabled children entering her classroom at the same time. It would be difficult for anyone to meet those needs. Three months later she received her official autism diagnosis and I discovered that she was getting no individual speech therapy and was usually being removed from the classroom because she was so disruptive. So the special education department and I came up with a new plan. A program was established just for Ashley. She was in her own classroom with her own teacher 5 days a week and we continued the same program at home on weekends. We hired and trained a woman to work with us at home. The teachers and I had planning sessions and made sure we stayed on the same page. Ashley made tremendous progress during this time. They even agreed to the same schedule during the summer. The following year her teacher had to split her time between Ashley and another school. So Ashley worked with two paras under the guidance of this teacher. It wasn't ideal but it worked. The only complaint I really had during this time period was that an uninformed OT made a decision to put a splint on her hand. It was an effort to make Ashley stop biting her own hand and it was not discussed with us. Unfortunately she had it on for 2 school days before I discovered it and had it removed. This was just enough time to teach her to bang her head. A behavior she didn't have before the splint, but has done every day since then. To this day she bangs her head and bites herself. The next school year several other students were identified with autism, so Ashley's program became the autism program. They moved her teacher to the other school full-time and brought in a new teacher certified in autism and pre-school. From the beginning we struggled with this teacher, although she was an expert in autism, she was very frustrated by Ashley. They made all sorts of changes to Ashley's program and Ashley did not respond well. At this same time Ashley received a new speech therapist who was also having problems with her. Jason and I began to discuss home schooling, but decided we would give it a try over the summer. In April of that school year we discovered the teacher was withholding Ashley's lunch as punishment. We immediately pulled her out of school and put all our energy into home schooling her. At this time, she was six years old. I don't know what else was going on at the school, but Ashley was so traumatized she would start crying if we just drove in the direction of the school. We continued to receive speech therapy from the school for the next two years, but Ashley was making no progress and the therapist told us she had no idea of what to do. At that point we pulled her out of speech as well. We started getting speech therapy at the local hospital. At the evaluation, this speech therapist recommended a computerized device. It took almost a year to get it, but was the best decision ever made for Ashley. I had heard that the autism program at the school had improved greatly and had a wonderful new teacher, so this past November we put her back in school. The new teacher was wonderful. She had been running the program for the last couple of years and had excellent ideas. Ashley really took to her and she was very willing to work through the adjustment of going back to school. Everything was going great until six weeks ago when they removed the teacher from the classroom due to allegations. We were not allowed to talk to her and things rapidly spun out of control. The classroom was largely being run by paras. Other people have been coming in and making decisions for our children, even though they don't know them. The kids and parents are all upset and we just want our teacher back. During this time period Ashley's talker worth $7500 has been broken, her IPOD has been stolen, her morning para has been let go. The school has not taken any responsibility for the things that have gone wrong. She is upset and her behaviors have gotten worse. There has been no consistency in her school life. She has been sent home sick. The school told me she was running a fever and I needed to get her and she couldn't come back the next day because she has to go 24 hours without fever. The funny thing is I got her immediately and she did not have a fever or act the slightest bit sick. Now we have been told all allegations against the teacher have been dropped and she will return to this class next year. That doesn't take away the damage the last couple of months have done to Ashley, the other kids, and the teacher. We just want Ashley to be treated with love and receive the best possible education. I think all parents understand how difficult it can be at times to make decisions for our children. That is particularly difficult when you are raising a child with special needs. Bad decisions no matter how small can have lasting consequences. Some decisions are easy: no my child can't play in the street, they can't go places with strangers, etc. But other decisions can be very difficult and we just have to rely on prayer and the wisdom of others.

Our School Experience

It was a difficult decision for us to decide to try public school again. As we come to the end of the school year and I look back - I wonder if it was worth it? I guess it depends on the child. Josh loves school and it was definitely the right choice for him. But still it is not much easier having him in school versus home schooling. I was right in my assumption that he could easily fall through the cracks. The past six months has shown me that I will have to stay very active in his education and be prepared to fight for his needs to be met. But he loves the social aspect and the structured schedule, overall it appears to be the right choice for him. Hailey could go to school or be home schooled, either way she would be fine educationally. The work is very easy for her and she loves all the fun, social aspects. However, she calls me a lot wanting me to bring her forgotten or lost things or because she has a stomachache and wants some medicine. I haven't quite figured out what is going on - whether she really has that many stomach problems, is nervous, or just wants attention. Now Ashley is a whole different story. It is hard to tell if it was the right choice for her because there have been so many internal problems within her classroom that have greatly affected her. We put her into school believing the one on one interaction, time away from me, and the social aspect would be good for her. We were concerned because this program had been a disaster in the past. However, we had heard so many good things about the current teacher we thought it was worth a try. I really do love the teacher and so does Ashley. She has great ideas and Ashley has really responded to her. The problem began when they removed the teacher from the classroom six weeks ago. It has been a disaster ever since! All sorts of unfounded accusations and issues have come to light and she will be out the rest of the year. In my opinion, she is an awesome teacher, who is not getting the respect that she deserves. All of the other parents of the children in this class support this teacher. I think a lot of the issues stem from people having very little understanding of the stress and pressure of running an autism program and how different from other classrooms it is. This is a particularly difficult program because in a 3rd grade class of 54 students, 6 of them have autism. This is an extraordinarily high number of autistic students well above the statistical average. We hear that the allegations against the teacher were unsupported and have been dropped and that she will be back next year. So I guess we will wait until next year to make the decision on whether this is right for Ashley.

Extra Kids for a Weekend

We made a deal with some friends who also have a special needs child that if we watched their kids for a weekend then they would watch ours. It is a perfect trade because it is fair and we all know what we are getting into, for the most part. So we watched their kids a few weeks ago. We had them from Friday afternoon to Sunday evening. All of the kids mine and theirs were very well behaved and there were no major incidents. But it was a stressful weekend! Part of it was self-induced because I spent a lot of time worrying about what could go wrong. Their son and Ashley are very similar, but also very different. He is eighteen months older than Ashley. They both can be very demanding, do crazy things, and have sleep issues. He can speak, but can't use one arm. He is a little more likely to wander off than Ashley and also more particular about food. At our house, he seemed to need more space than Ashley. Not that I can blame him any house with 5 kids is chaotic. We could reason with him a little easier and he would at least answer when we called his name. He did spill a lot more things than we are used to. My husband likened it to changing a workout routine - one isn't harder than the other you're just exercising different muscles. Their daughter was much more easygoing than any of our children have ever thought about being. All and all it went very smoothly and all the kids had a great time. Jason and I get to have our great time when we get our weekend! Hailey did comment that she missed their little girl because it was like having a sister that can talk.