Aggression

Aggression and Behavior Difficulties with FXS Children

We have gone through a few years of very severe aggression. Though it is not common in all children with Fragile X Syndrome, it can be very severe in others.

Our children can be very physically aggressive. They are strong enough to destroy furniture when they are angry. Their tantrums have become worse over the years and can come on for no apparent reason at all. There are some triggers we see, like not getting their way, stressful situations, i.e. crowds and or noise, over stimulation, etc. They are functioning below their age level and throw tantrums like a 4 or 5 year old but have the strength now to back it up. It can be quite frightening at times and it is worse in households where there are more than one sibling affected by Fragile X.

As we talked about on our behavior page we have incorporated a time out room in our home to accommodate us during these occurrences of aggression, as physically restraining them is becoming an issue as they get older and stronger. Also the potential to accidently hurt them is there when you are restraining or they can physically harm you.

The boys can fairly easily be re-directed after a few minutes of minor tantrums with soft voices and physical restraint so that they can calm themselves down enough so that we can let go of them and verbally reason with them. Where as our daughter can become highly agitated and doesn't calm down as easily. She has to be physically restrained by one of us for a longer period of time as she becomes extremely violent and will attack us and the boys. So the time out room comes into play for us. If you can not do this in your home, the only way to deal with it is restraint. Taz tends to be very verbal, i.e. swearing and threatening bodily harm to us. We have to wait until she has tired herself out to let go of her and even began to start the reasoning process.

It is very important to have a good doctor that will help you with these difficulties, as it is so hard to do it alone! We have a great pediatrician, who is always available for our concerns, where as we see a psychiatrist that doesn't have the same qualities or time but has been able to get 2 of our children into a hospital setting to be monitored for behavior and medication issues as well as written letters for us to receive more funding in their schools. Both of which have helped us greatly in the school setting.

We also have funding through the government to have some help in our home to deal with some of the issues we face everyday with the children. This funding is based on their disability and behaviors. We have been dealing with things on our own for a little while as our agency has had some staffing difficulties and staff are not allowed to restrain, this can make things hard as well. This has burned us out a fair bit which does make it more difficult to deal with some of the aggression and not take it personally. We are making sure that we do get the help we are funded for so that we maintain a positive family environment in our home. If you can get funding to help out, we strongly recommend it, as it helps you regroup, recover and restore the energy you need to take care of the individual or individuals affected by Fragile X Syndrome. You need to take care of yourself to take care of them!

We are finding, as the boys are getting older, they are becoming more mellow now, our incidents of severe aggression are lessened and the time out room has helped alot. Taizsia, who is higher functioning, on the other hand has a much bigger issue with the behaviors and has more severe behaviors that have increased as she has gotten older. We are not sure if some of these are mimiced behaviors from her brothers or environmental over stimulation because of the dynamic with the three children. We are hoping someone will do a study on this situation.

Some of the things we use to help with their behaviors and aggression are: