Behaviors and Solutions

 

 Suggestions to help you through these trying times

I am writing this next page out of experience with our children with Fragile X as well as my experience in the School system being a Special Needs Teachers Assistant for 9+ years as well my experience in the rehabilitation field and as a parent.

As with most children with Fragile X the most important element for any kind of hope in reaching a happy medium is ROUTINE, ROUTINE, ROUTINE!! They live for the dull old everyday routine; it is literally what they get up for in the morning and is a must! If there is going to be a change in the routine, it must be discussed with the person repeatedly, tell them a few days in advance if possible, a week or more is best, especially if it is a major interruption such as long distance travel, new school year beginning, loss of a familiar caregiver, teacher, baby sitter, shopping for clothing or anything, visiting somewhere new where there are going to be a lot of people, if you are going to leave them over night or over a period of days with someone other than yourself or over a period of days with someone other than yourself or a usual caregiver (this is a big one as they love whole hearted the one who is with them the most and depend heavily on this person for all their needs, it becomes a big comfort issue! They do not bond at random!)

Also consistency is a must, at home, school, day care, grandmas, etc. everyone must be on the same page.

These are things that can be discussed and put in writing in a common book that everyone has access to so there is no confusion and you have it to look back on in case of any discrepancies. It works great when you get a sitter too!

Here is a list of things we have faced and avoid to avoid conflict, as well as situations and solutions to deal with problems that arise.

Situations to avoid:

  • Avoid taking them grocery shopping, to a mall or any other areas that there are a lot of people, and you know will be over crowded at that time. We have found this is asking for trouble, unless you find your child can handle the over stimulation and they are OK, it's just not worth the hassle! They become so over stimulated in crowds and don't like the noise, in some cases it almost makes them nauseous.

    If you can't avoid these situations, go with how the person feels, if you find they are acting up or starting to stress out, ticking, making lots of noises, crying, leave, pick it up later date of be prepared to continue and live with the consequences! Don't completely cut these out as at times they may be feasible and you don't want to completely limit their social contact in groups, just be really aware of the stressors that follow these activities and take action as needed. You know your child and can be the best judge of their moods, and remember to let them know well in advance that you will be participating in these situations.

    We have found that these distractions can do wonders if you must take them shopping or somewhere they don't like to be:

  • If you are shopping in a department store and they want a toy, if you have no intentions of buying it, give them the toy to hold on to, when your done distract them with a small treat, taking the attention away from the toy and get rid of it, they won't even notice it's gone! Also, it is not a good idea to get into the habit of buying a toy every time you go shopping as it gets to the point that they expect it, and are not impressed when you say no, then next time you will have difficulty with behavior.
  • Bring snacks, it always works! Small amounts at a time to last throughout the trip. Food is a great distraction but avoid lots of sugary snacks and gum! Small candies work great but make sure they are naturally sweetened or sugar free! Raisins, peanuts, Ritz minis, carob chips (fake chocolate),etc are all great!
  • Bring small baggies of toys from home, 2or 3 so you can change over when they lose interest (cars, McDonalds toys, small things from the dollar store, etc.) Just taking them out of the bag is fun!
  • Avoid excessive rough housing as this also over stimulates and they don't know what is the appropriate time to stop or how strong they actually are! We call our boys the bear cubs, as they constantly mauled each other and their sister too! Their social skills are so lacking that they don't understand that other kids don't necessarily play this way, or enjoy it.
  • If for any reason you have to break your routine for something that has suddenly come up, make sure you repeat to them exactly where you are going or what you are going to do, as this causes a serious disruption and they can often become seriously affected by even the smallest of changes.
  • Avoid red food dyes, lots of sugar, chocolate, pop, caffeine contrary to popular beliefs these substances do affect children with Fragile X, especially since ADHD (Attention Deficit Hyperactivity Disorder) usually go hand in hand. We have fun food night and allow them to have some of these things or only use them as a reward for good behavior or accomplishments occasionally.
  • Don't let them get bored, this is the worst thing to do as it will escalate their behaviors and cause more grief than if they are kept busy or amused! This can be very time consuming and frustrating sometimes as we all run out of ideas, but even a quick walk, a favorite story, a favorite video (trust me I have seen enough Barney to last me several lifetimes!!), will often work.

  • Traveling can be a difficult one too, our children have traveled by car, plane, bus and train long distances. We found that lots of prep work, planning, reminders and distractions really helped to make the trips easier. Keeping them busy and amused is the best way to travel, lots of toys, books, music, frequent stops are all great. If you can afford it, a portable DVD player is great, even for shopping trips in the city, as it keeps their attention and they are distracted by the show and then when you stop, you can use it as a reward for good behavior when you return to the vehicle.

  • Lack of sleep for the whole house can be a big issue, if the child isn't getting enough sleep, you aren't either and this can have so many negative affects to everyone. If your child isn't sleeping through the night, is really agitated or very restless while sleeping, make sure you tell you Dr. immediately so you can work on this, it may be as simple as implementing a very stringent bedtime routine, or medication may need to be introduced to help calm some of the excess energy. A good sleep really keeps a lot of behaviors under control and helps you as well keep healthy and in control.
  • Self abusive behaviors are the worst situation, ours self bite, bang their heads, throw things, etc. The best way to avoid further confrontation is to ignore the initial signs, whining, yelling crying, and redirect them as best you can. If their are other children around or you feel the environment is not safe for you or the child put them somewhere it is safe for them to calm down.
  • Abuse of others, especially siblings and parents, they do not tend to go after other children, though ours have attacked some of their caregivers. We remove them from the situation immediately, even if they are at a restaurant, store, etc. and put them where they can no longer hurt others, after the incident is over, they have to take responsibility for their actions and apologize. They lose a privilege, like snack or computer time.

  • These are the most serious of the behaviors, self injurious, tantrums, hurting others, etc. You have to deal with these immediately, "wait until you get home" or taking away a reward coming up in the future, even the immediate future, will not work. Once the incident has started they don't even remember what set them off in the first place. Reasoning with them doesn't work! Once it is over it is long forgotten and their life goes on as if nothing happened. Here are some things you can do:

  • Remove them from the situation, distract, distract, distract!! If that doesn't work remove them from objects or situations that can hurt them, you or they can hurt. Corners work great, time out is an OK tool, it gets them out of harms way and gives you a minute to collect yourself too!
  • Use verbal positives like, " I hear that you are upset, when you stop crying, I will listen." When they start to calm down, "great calming down, you are doing a great job of not crying." This shows them that you are ready to listen and they have probably forgotten why they were upset in the first place.
  • Hurting others is a tough one, as they don't understand that the person has been hurt, the comprehension is just not there. They almost look as if they are pleased with themselves, but this in most cases is not the case. Remove them from the situation, reiterate what they did was wrong and why a couple of times, do your best to get them to look at you while you are talking to them, get them to apologize (if they are verbal, if not a gesture to show they are sorry, hug, handshake) to the person they hurt,( more for the injured parties benefit to let them know you are validating their feelings of being hurt and to let them know that you don't accept that kind of behavior). You can also exclude the child that has injured someone from the current activity or situation for a few minutes, (no more than 3or4), then allow them back stressing only appropriate behavior. They don't like to be away from an activity they enjoy, this may be enough to curb the behavior.
  • Self injurious behavior is a hard one, we still continue to struggle with all of our children. The best thing we have found that works is a calming voice and redirecting them to another activity or some soft music, they like. Carrying a walkman can really help out during these times of stress, as it distracts them from the noise and chaos around them and helps them to centre themselves again.

    Always remember to choose your battles, if the situation is something that you can avoid, don't do it. If shopping is a major issue try to centre it around a time you can do it alone like when the kids are in school, or in bed. If you have no choice but to take them, just make sure you are fully equipped to handle situations and try to convince a friend, neighbor, relative to come and help you. I realize it is difficult and we have had to juggle a lot around at times, especially when the children were younger to make things work out best for all concerned.

    Tips we have used to create control routines, rewards:

  • Time out is the most effective way to deal with any situations may arise; it also gives you a minute to regroup and calm down. As these children tend to be aggressive at times and you are constantly reminding them to not be so rough or not to hit, etc., I don't think corporal punishment is effective, as it basically says it's OK to hit if you are disciplining the child. Remove them from the situation tell them what is not appropriate and put them in a safe place to calm down, reassure them they will be able to rejoin you when they are calm and ready to listen and or behave. Putting them in their room is not the greatest idea we have found, as they tend to associate being there with being punished. If you can get them to stay in a corner away from harm or harming, this is the best place for them to be.
  • We have recently built a time out room in our home that we put a child that is having a severe tantrum, aggressive behavior or is being physical or verbally abusive to others. It works very well, we put them in, shut the door and talk them through the episode while they are not able to be overwhelmed by their surroundings and distractions. It diffuses situations alot quicker than before and it is also one that they use at school with all three of our children. They even use it on their own to time themselves out when they are feeling like they are going to have a melt-down.
  • Create a bedtime routine that will help calm the child, 1/2 hour of a low energy favorite show, a small snack, then a warm bath, followed by a bedtime story and some back rubbing, works wonders for our three. They are also on medication at night to help calm them, but they do build up an immunity and it eventually stops working, so the routine is so important! Keep it simple and down to a time frame so that you are not stuck with one that can't be carried out by other caregivers or grandparents etc. Also make sure they have a favorite blanket or toy used to snuggle at this time, or music that is low energy, works as well. They are extremely sensory driven and touch, if they like it is a wonderful tool to help lull them to sleep as is a favorite bear or blanket, they can cuddle, smell and rub.
  • Toilet training is a big issue with fragile X it is very difficult to do. It is important to be very firm but supportive and if it isn't happening just stay as consistent as possible and don't be to upset, just keep trying. We have found visual rewards such as sticker charts work very well, as well as special underwear with characters on them that they like, even a small thing from the dollar store if they are dry for a whole day. Don't use food for reward as it doesn't work and it is very hard to get them away from that process. It is a slow process and sometimes doesn't happen until long after other children, our boys are still working on it. We find using pull-ups during the day can almost hinder accomplishing training, as they don't seem to be bothered by wearing them, it almost seems to encourage them not to go in the toilet, let them be in underwear at home and school (if they have the support) they have flushable wipes now and these are great at teaching proper hygiene, give them a few and let them be independant. We now only use pull-ups during long periods away from the toilet, like driving for long periods or at a movie, sometimes at night for Taizsia, but use lots of praise, even phone a favorite adult the child to praise, this works so well, as they are so proud and encourages them to keep dry! Do not allow your child or children to drink anything for a hour and a half before bed, so that the last time they are on the toilet before bed will hopefully be enough to keep them dry for the night. Byron and I have even woken our children up and put them on the toilet before we go to bed, they usually go straight back to sleep, especially if they are on medications. This helps keep them dry and it is still early enough that they can go back to sleep and aren't awakened at 2 or 3 in the morning to go or are soaking wet and can't go back to sleep, so then you also have to get up, change them and the bed and by then no one is sleeping.
  • Mealtime is another big deal. Our children as do many with fragile X are very fussy eaters and tend to stick to what they like. Also, like to eat and eat and eat, not knowing they are full. Snacking between meals becomes a major issue; as well ours would eat all day and night if we let them! Use consistency at the table, make it a family rule that everyone tries something once, if they don't like it they don't have to eat it, but they try it first. Also, if seconds are wanted everything on the plate must be gone first, then more may be had. If they child is a slow or finicky eater, we place a time limit (within reason, as you don't want to encourage fast eating, choking and not chewing the food), after everyone else is done set a 10 minute limit and if the child chooses not to eat, place the plate in the fridge and if they complain about hunger they get the choice to finish dinner or nothing else. It takes awhile but it works! Only allow small snacks between meals, such as an apple or cookie, if it is close to mealtime, hold out, you will get a lot of fuss but they will eat better. Finally, no sugary juice or drinks while eating as it fills them up and they won't want to eat.

    These are just a few things we deal with on a day to day basis and have had professional input from behavior specialists, doctors, psychologists and educators regarding these issues and the best ways to handle them. Not all children are the same, but it never hurts to try, we have had a lot of great advice from parents with children with fragile X also. If you have an issue you are not sure of, let us know and we will try to help as best we can. Also we love to get advice and personal stories we can share with others and use ourselves.

     

    In Canada in almost every province, the government has organizations that are able to provide some insight into handling different behaviors and situations you are struggling with. If you find you are facing some problems that are getting overwhelming and you are having a hard time coping we encourage you to seek them out, for your sanity and safety as well as the childs. Even talking to you doctor or pediatrician can bring a wealth of information; they also may be able to direct you to these agencies with ease. If you have access to a computer and live in Canada, you can always type in your province and city and the words" provincial government" and it may bring up the web site for your province, or call the government of Canada, 1-800-OCANADA( in your phone book) and they will be able to assist you. If you live in the USA, you can look under your state government and they may be able to direct you in the right direction, try your Federal government offices as well. You can also call any support lines in your community or ask at your childs school, they may be able to assist you as well. I hope this helps you deal with some issues, you can always E-mail and we may be able to help with others you are facing or find some answers for you.

     

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