He Just Knows

There are moments in time when the frustration with my son boils over to the point where I just want to scream to the heavens, or Calgon, to take me away from here!

That's when it happens.

My son will go sulk somewhere for a bit and then he will come in my room or find me where ever I have hidden myself away and he will give me a hug, a kiss on the top of my head, or his new favorite smile-maker the "truffle shuffle." If you haven't seen The Goonies, you won't get that last reference, sorry! (And by the way, who hasn't seen The Goonies?) The point is, he can sense it. He knows when I am at that breaking point. Sometimes, he's bad enough that he will push me over the edge and tumble down with me. Other times, he gets goofy, makes me smile and forget that I was ever mad at him.

The absolute worst thing and the greatest thing about my son is that he is almost two people. It's the worst thing, because you never know which one you are going to get. You could get the moody, frustrated, mess of a boy or you could get the kid with a sweet smile and the mischievous prankster. It's the greatest thing because without the "down" sides I don't think we'd appreciate the "up" side as much!

Living with my son is one of life's greatest challenges for our whole family, but it can also be one of the funniest. He reminded me of that this morning and I just thought I should share! 

It's All About the Schools

Dealing with an autistic child is never easy. What can make a world of difference is having a good staff in schools to rely on. When Devlin first started school I knew there were things wrong with him. I couldn't get anyone to listen to me though.  I could see that not only was behaving strangely socially, he had obvious problems with academics. During my son's Kindergarten year, when these things should have been noticed by staff, my son's teacher went out on maternity leave early. In the wake of her absence were a series of substitute teachers. My concerns were passed off to the next person, or not, and nothing was ever done about having him evaluated. At the end of the school year we moved from North Carolina to Florida. Devlin's first grade year proved to be a better experience. His teacher recognized the issues he was having and put him in for testing. This would be the first time we heard Asperger's or Autism in relation to our son.

While we were in Florida, things smoothed out a little more for Devlin, the teachers and staff at the school there were phenomenal for how they dealt with him. unfortunately we were a military family and our three years in Key West came and went rather quickly. We moved back to North Carolina. It was not a happy move. The kids and I definitely did not want to be there anymore, and the schools just made it that much worse. 

I will say that even in the worst schools and school systems there are always some bright spots. My son' fourth grade teachers were on the ball with him. Mrs. Davis - his reading teacher - was instrumental in getting my son to read. He started reading to impress her and took off with it. It became a passion of his for a while. His other teacher also recognized that Devlin had some problems. Apparently, there was a problem with getting all of my son's information from the Florida schools and while they were aware that he should have an IEP for his learning disability with writing, they were unaware of his previous Asperger's diagnosis. 

During our first parent/teacher conference Mr. Kidd asked me if Devlin had ever been diagnosed with anything in the Autism spectrum. He approached me on the subject very cautiously, obviously unsure how I would respond. I think I breathed a sigh of relief and then so did Mr. Kidd. He explained to me that one of his friends had a child diagnosed with Asperger's who reminded him a lot of Devlin. Mr. Kidd pushed to have Devlin evaluated further. Because of his pushing, Devlin was able to go through testing with TEACCH in Greenville, NC. 

Devlin's diagnosis changed a bit, from Asperger's to high functioning Autism. I still do not understand the differences, as these issues are all very closely related and do in fact fall under the same umbrella, Autism Spectrum Disorder.  As Devlin's behavior began deteriorating over the next year and a half it was clear that not enough was being done. Devlin's new group of teachers were the opposite of helpful. In some ways they made amplified his symptoms by the way they were treating him. They were refusing to utilize the Resource staff to help out with Devlin and instead were berating him openly in the classroom.

Because of Devlin's downward spiral, we began seeing a therapist and going through more testing. Again, therapy is something that works or it doesn't. As important as it is to find the best schools and staff for dealing with Autistic children, the same can be said for therapists. The woman who worked with us initially was horrible. She missed a lot and refused to do anything about some very serious situations. My son's guidance counselor at the school was more helpful than the original counselor my son went to. After talking to his pediatrician about the seriousness of his behaviors, Devlin was placed in a hospital setting for a week for evaluation. He was started on medications that made a world of difference.

Medications are not the be all end all or a cure in any way for the problems that are associated with Autism, but they help make those problems manageable when they are really bad. Around the same time that all this was happening medically I had decided to remove my son from that school, because there were no alternative teachers available. I began homeschooling Devlin, which had its own set of issues. Thanks to his new medicine that was leveling out his behavior, Devlin could no longer focus long enough to do his school work. Many medications have side effects, my sons medication had the unfortunately side effect of making him ADD/ADHD on top of everything else.

By the next school year, when he was ready for sixth grade, we moved to South Carolina. The middle school he attends here has been amazing. The staff is amongst the most caring that I have ever had the pleasure of working with. This is where I say, it is all about the schools. You can not raise a child with problems like those associated with Autism without a very good support system. His middle school has been instrumental in helping me maintain my sanity while dealing with my sons increasing problems. The school has bent over backwards to help my son adjust and to make sure he is successful. They have even begun a trial program where my son was taken out of some of the worst classes, behavior wise, and placed into advanced courses. They understood that he was reacting to other students behaviors and being placed with a different caliber of children has had a positive impact on his ability to learn in a class he seemed to be struggling with. Whereas he used to be listed as having a learning disability in math and writing he has now been downgraded in math. He has done exceptionally well in math testing and his grades have begun improving. Hope can be a very tangible thing. Seeing the success in this one area helps us to keep going during the darker days and the school deserves the credit for giving that hope to a family who so very desperately needed it.

Not everyone can afford to move to a new school district, but I encourage other parents with children who have issues to stay on top of the staff in your schools. If they aren't doing enough for your child, do not be afraid to demand they do more, be sure to do it nicely though. If there is a school known for being better with children who have difficulties, talk to the school board and see what it will take to get your child transfered. The right staff, the right school, people who care, they all mean a world of difference for children with these disabilities. In my family's case, it was all about the schools!

The Week From Hell

Kids will be kids. They have their good days and bad whether they are diagnosed with Autism or not. The last week in our lives has been extremely difficult to handle though, so I am going to spotlight it here. I think it definitely sheds light on what families go through when dealing with children diagnosed in the spectrum.

Before I start, I believe a little family background is in order. My husband and I separated this past September. I now live with our children in South Carolina while he lives in North Carolina. My eldest daughter stayed behind with friends in North Carolina to finish her 10th grade year in high school. She was with us last week, as it was her spring break.

As you may or may not know children with autism have trouble adjusting to new things. My son is no different. Having my eldest daughter here was a bit of an upset for him. While he was happy to see her, he didn't like the fact that she was getting so much of my attention. This coupled with seeing his dad for Easter and having him leave again set off a series of moods that would lead to one of our worst weeks in a long time.

While my daughter was on Spring Break, my other children had to go back to school. Their break from school occurred the week before Easter. Monday morning rolled around and I knew I would have problems with Devlin. Over the last four weeks he has become more and more adamant about not wanting to go to school. There are problems with bullies (that the school is taking care of) and with frustrations in class due to his learning disabilities and being easily distracted by classmates in classrooms that are overcrowded. It was no surprise that my son started begging me first thing to stay home. I, of course, told him this was not possible. Then he begged me to drive him to school instead of having to ride the bus. I also told him no to this, because on the days that I drive him he begs, cries, and pleads for me not to drop him off and refuses to get out of the car. It is a daily heartbreak to get my son to school, and yet one I have had to harden myself to.

The morning quickly spiraled beyond the norm, however; as he started throwing a screaming tantrum about not wanting to go to school and how it wasn't fair that the other kids got to stay home. My two youngest children were getting ready for school that day too. They were not staying home. Then he brought up a day, two weeks prior, where the two little ones had been sick and did indeed stay home one day. He refused to acknowledge the fact that they had been sick and it wasn't just about staying home for fun. No matter what I said to my son Monday morning, he wasn't hearing it. He quickly regressed into more screaming fits, hitting, and flat out refusal to cooperate. I had to hold him down to dress him myself, because he refused to do so. My son is going on 13 years old this year, so this is no easy feat to accomplish.

Time to catch the bus has come and gone now, and my two littlest children are in danger of being late to school, so I asked my oldest daughter to take walk them to their school, which is right at the end of our road. I continued struggling to get my son ready, and he continued to fight me every step of the way. Finally, my mom was able to talk to him down enough so that I could get him in the car and drive him to school. The entire way there he never let up. He refused to get out of the car once we were there. I had to have his guidance counselor help me get him out of the car. This was not the first time she had to assist in this. After a grandiose amount of bribing, sweet talking, and coaxing my son finally went to school.

I picked him up for an emergency doctor appointment with his therapist mid-day. His medication has not been working properly, and this morning was just one explosive example of how his mood swings are becoming too much to handle. We have been given a prescription for yet another medication to try and I take my son back to school. There are more tears, begging, and pleading on his part about not going back. I take him anyway. I have a meeting that afternoon with his school's IEP(Individual Education Plan) staff concerning his math abilities/learning disabilities.

During my meeting with the staff at my son's school, I am heartened by the fact that they are willing to just about bend over backwards to help accommodate my son and his issues. Devlin has been failing math all year. He has a well documented learning disability in math and we are trying to figure out why the school has taken away his IEP in the subject and left him to fail. As it turns out, my son's test scores have been extremely high. He is in one of the rougher classes though, where the students are always picking at one another and distracting from the lesson. Devlin's math teacher comes up with the idea to put him in her honors math class instead. My initial reaction was panic. My son is failing, why on Earth would you put him in an advanced class? I couldn't argue with her logic though. My son is a very reactive person to the peers around him. If they are pleasant to be around, my son is as well. If they are the hellspawn of the classroom he will follow suit to try to fit in. His teacher says, "by putting him with more mild-mannered, focused children, in a much smaller class, he may thrive and be motivated to do better." She addressed concerns from other staff members and recounted tales of other success stories she had with children who had similar issues to Devlin's.

Starting Tuesday, Devlin would be going to the honors class for math and we left the school hopeful. That hope was short lived when Tuesday morning quickly became a repeat of Monday. As I stated earlier, Autistic children do not do so well with change. My son woke up with severe anxiety over being put in the "smart class" when he was a "failure at math." His tirade quickly became worse than the previous day and my daughter and I had to physically carry him to the car and stuff him in it to get him to school.

Once at the school, I had to physically restrain my son from running away and carry him into the school building. I will be honest with you. There comes a time when parents break. There is only so much a person can take and I while I was struggling to maintain a grasp on my son the whole way to the guidance office, tears were streaming down my face. Once again, the staff at Devlin's school were amazing. They dealt with the situation and his angel of a guidance counselor was able to talk him down after a while.

If you are wondering why I just didn't give up and leave him at home, let me fill you in. My son can not miss any more days of school. Because of doctors appointments, and him doing this other times throughout the year, a suspension for fighting, and him faking sick, there just aren't days left. Even if there were days left, it just sets a bad example for him. Once you give in to certain things, it only makes the fits worse the next time, so I try not to do it.

Throughout the rest of the week, we went through smaller scale fits here and there, but he finally managed to get ready for school each day, thanks to his guidance counselor's promises that if he came to school every day for the rest of the week she would have a special lunchtime treat for him on Friday. I did mention that she is an angel, didn't I?

By the start of the weekend we were hoping that the worst was behind us, until I told him no to spending the night with a friend of his. Then more fits were thrown. When I say my son throws fits, I don't mean he just yells and cries. I mean he screams at people at the top of his lungs, he tries throwing things, and breaking things. We have to separate him from his siblings and remove breakable objects. In some cases, we have to physically restrain him. There have been times when I have gotten hurt in doing so. I still have bruises from my attempts to get him to school on Tuesday. It is not an easy thing, especially as he gets bigger. I have been dealing with these types of fits since he was a toddler. When he was younger I used to have to hold him so he wouldn't hurt himself. This is the heartbreaking, gut-wrenching, beyond frustrating part of his condition. There are moments, especially in weeks like this past one, where I don't think I can continue to do this. There are times where I look at my other children, who have to be ushered out of a room so they don't have to witness his outbursts and I think, this is not fair to them. There are moments when I just want to throw my hands in the air and pray for someone to take my son from me, because it's all too much.

Then there are the moments where he throws his arms around me and hangs on for dear life. A hug from my son is something beyond special, because it's something he has learned to do in the past three years. Hugs are things we tend to take for granted as parents, because children give them so freely. My son never did. It never occurred to him. We had to teach him how and why to hug people and when it was appropriate. I look at things like that and the fact that he can make eye contact when he talks to people now, and I remember how much progress we have made. It makes me hopeful again, and I remember that while there are horrible times, there are good moments too and we are making progress. I consider the fact that my other children will have more patience with people as they grown up, because they have had to live with the things that go on in our household.

My youngest son, who is nine, asked me not long ago what will happen when Devlin grows up. He wanted to know if he will be able to work a normal job and live on his own. I told him I hoped so, but I wasn't sure. He surprised me by saying that he would help me take care of his brother when he grows up. He told me he understands that Devlin has problems and that I am going to need a break sometimes. Those are the moments that give me hope and keep me going even when we have the bad weeks, like this past week.

Don't get me wrong, it's not always bad. My Devlin has a fantastic sense of humor these days and can make you laugh like no other. He amazes me with his ability to put things together with ease, and there are days that I watch him grow into himself and smile with pride. My point in giving this overview of a really bad week is because I don't think people truly grasp how hard it can be to deal with children with these types of disabilities. It takes a great deal of effort, strength, and love to get past the difficult times. It also takes help from others. My children's dad comes to see them one day a month, he does not take them for visits. There are no days off for me. I can't leave my son with my parents because he may throw a fit while I am out, run away, or worse. I am not the only parent in this predicament. I try to remind people if I seem cranky - there's a good reason for it. If I seem stressed, or out of sorts - this is why. And for those who don't know me, personally - remember someone in your life may be going through similar things. I know, when you don't have to deal with something yourself, it's hard to conceptualize it, so let this be a gentle reminder.

I love my family and though we have our bad weeks, I try to look forward to the good ones and hope the better days will come more often. This week will be better - or so I tell myself!