This guide is intended to help families cope with the daily challenges of living with a child who has Fragile X syndrome. Many tips offered here may also help parents with children affected by other disabilities.
We thank all the parents who contributed their wisdom to this guide. Special thanks go to Wendy Dillworth, Mary Beth Langan, and Sally Nantais for editing this guide.
Coping (For Parents)
Coping and Inspiration
The best coping tool ever is a sense of humor! If I could only recount the number of times I started out crying and ended up laughing. Having a sitter or grandpa on speed dial also helps. Sometimes just stepping away for a while is the only thing that helps. You come back refreshed and ready to get on with it. It also helps me to review old articles and books I’ve read about why our kids act the way they do. When I find myself thinking “why is he doing this?” I get those articles out and they help me see that my son isn’t doing anything to torture me, he’s doing it because he has Fragile X.
One thing that really helps me to cope is keeping two journals. The first journal is all about our journey to a Fragile X diagnosis, about my feelings of loss and sadness regarding all the issues involved with having a child with Fragile X. Whenever I feel overwhelmed by Joey’s needs, or impatient by his steady but slow progress, or if I’m just feeling gloomy because Joey is so far behind his cousins, I write down my feelings about what happened. My first journal is a place for me to vent and record my sad feelings so that I don’t drive everyone crazy by talking about them all the time.
In my second journal, I record all the happy times we have with Joey. Many people comment on Joey’s friendly personality and big smile. I write all of those stories down in my second journal. I record all of the fun times that my parents, sister, husband, I or anyone have with him…When I’m feeling down, it helps to read my second journal and focus on all the joys, happiness, love, and laughter Joey has brought to our lives, as well as others’.
I don’t usually take Inspiration from T-shirts, but this one reminds me to focus on the fun and wonder of my son—who by some measures, doesn’t keep up with other kids: “Childhood is a journey, not a race.”
What have we learned? Patience, tolerance, and the truest meaning of love I think. Unconditional, total love. This has been the biggest blessing of Fragile X being in our lives.
Grief and Guilt
I remember my family doctor telling me that there would be times when I would revisit the pain, tears and depression that come with a special needs child. The pain and hurt tend to erupt from nowhere at different milestones in a child’s life. I felt the most gut-wrenching pain when Josh realized he wasn’t a regular boy during his high school years. Some parents feel the pain at birthdays, high school graduation or seeing other children the same age achieve goals they know their child will never attempt let alone achieve.
All parents have a dream for the children they bring into the world. Some of us lose the dream when we have to face the stark cold reality, that we have a handicapped child. Our life and the lives of those around us change forever.
Those of us dealing with chronic sorrow often feel alone and isolated. We often feel ashamed for crying, for feeling angry, for feeling hopeless when others are saying “get over it–move on.” We often feel guilty because we believe we did something wrong. Chronic sorrow is a neglected topic. Any parent suffering with depression, hurt, anxiety, or struggling to cope should seek out help. Parents need to know it’s okay to hurt, to grieve — it’s very normal.
Denial and Blame
Having a child with a disability is not something one ordinarily chooses. The beginning, the diagnosis stage, is one of the most difficult.
We all have dreams for our children that may be shattered with a diagnosis of a disability, be it physical or developmental. With the loss of those dreams comes grief and all the emotions that go with it: denial, fear, guilt, blame, anger, sorrow and acceptance. Grief doesn’t exclude things we can’t see or touch.
Denial came first. “They can’t be right, look at what he can do, at how bright he is?” Why do they measure our children on what they can’t do and not by what they are capable of doing?
Fear of the unknown is always present. As a parent, you want to know as much as possible and have all the answers. Unfortunately, you quickly discover there are no answers for the important questions… Sorrow was never as intense as it was in the beginning. It’s difficult to explain the depth of your sorrow: It was, and at times still is, immeasurable. Surprisingly, sorrow didn’t occur immediately, but happened a little later when hearing the words “mentally retarded” used to describe my son’s disability.
Grief may never completely end, but its intensity can subside. From time to time it will resurface and I’ve learned to welcome it, as it gives me the opportunity to be reborn.
In the movie, “Harry Potter and the Chamber of Secrets” there is a special bird called a phoenix. The phoenix has some unusual characteristics. When he reaches the end of his life, he bursts into flames and is reborn from his ashes. His tears can heal the wounded and he has the ability to carry incredible loads. There are times when I feel like the phoenix. I need to burn up so I can start over. From the ash comes additional strength and courage to go on and never give up. My tears may not heal the wounded, but they do heal me.
One day, my husband asked me to imagine our lives without our son. I could describe it with a single word: “shallow.” I’ve found you can live a “shallow” life just as easily as you can drown in shallow water. Strangely, many years ago “perfect” was something I strived for. Now, I strive for less than perfect, all because of a child who may never be “perfect,” who may never be “normal,” but who will simply love me with all his heart, no matter what.
Family Issues and Finding Out
We knew our daughter (now 27) had some sort of learning disability, but couldn’t find anyone who could help us figure it out. Eventually we are able to get FX testing, and we are SO glad we did. There are others on my side of the family (I am a carrier) who display FX signs ranging from mild to an uncle who is mentally retarded. But, my family doesn’t want to acknowledge Fragile X — I find that so sad. I know now FINALLY that I cannot change them. So, I will concentrate on my own children and my future grandchildren. Their lives will be richer for having the knowledge we have found concerning FX.
A little over four years ago, I was walking across a prep school campus with my husband David and my stepson Christopher. I recall thinking that perhaps it would be special for Brent, our one- year-old son, to follow Chris’ path in this school, rather than the one I had already assumed he would attend. But then the pit came to my stomach, because although at the time no one believed me, I thought there was something very wrong with Brent…And then, several months and many tests later, the words of the neurologist, ”I’m sorry Mrs. Yoshida. Brent had Fragile X Syndrome inherited from you, and your daughter Keiko is also at risk.”
Driving home from the doctor’s that afternoon, my head was spinning as I kept thinking…this could not really be happening to me. Yes, I knew it happened, but to others, not to me and not to the family we had created.
I didn’t crumble, I crashed. As the reality of Brent’s diagnosis hit me, a sense of utter hopelessness enveloped my life and I truly became stuck. “Never” and “couldn’t” became common vocabulary as I spent an inordinate amount of energy focusing on the many things I assumed Brent and our family unit could not and would not ever do or be. I had already planned my life, and nowhere had this happening even flashed before me for consideration. I often asked “Why me?” And, I didn’t hear an answer; I didn’t know if there was an answer.
Books and counseling assured me that it was normal and healthy to feel anger, guilt, grief, and frustration. And I did. Guilt – he had inherited it from me. Anger and frustration – with Brent, when I couldn’t understand him, with my husband and his ability to accept the situation and not just dwell on the negatives, with friends and family who tried, but couldn’t really understand, and with myself, because for the first time in my life, I couldn’t just pick up and go forward.
I don’t know exactly at what point the scale of my emotions became more balanced or what triggered it. It may have been watching Brent’s sister Keiko playing with him, encouraging him to keep trying to draw a simple line, and sharing with him her delight when he did — not bothered that he was four and should have accomplished this long before. It may have been one day at a drug store when, to my own surprise, I stepped up the counter to assist two people with language and mental disabilities explain to the pharmacist their needs …instead of assuming my usual reaction: impatiently waiting in line, perturbed at being delayed. It may have been the utter joy I experienced when Brent, nearly five years old, finally mastered the motor planning necessary to plant his sloppy, but first, real kiss on my cheek.
Slowly, very slowly, I began to see Brent as he was, rather that who he was not. I began to see our family use the sensitivities we had developed, rather than dwell on what we could not do. I began to see that the plans I held as to what would make my child happy were, in fact, what would make me happy, not Brent; that he would find his own niche and level of accomplishment. I began to use the words “maybe” and “we hope” rather than “never.” And, I began to see that as a family, we were not, as I had thought, deprived but enriched, because we were forced to go beyond our small, seemingly safe, environment.
A diagnosis of FX is a hard thing to cope with at any age…. We faced it at 32 months and found it very difficult because our son wasn’t really able to do anything by that age. The emphasis in discussions with doctors and therapists was always on what he couldn’t do. I found myself lying in bed at night concentrating on all the things he might do and how he might do them. No football, no band, no prom date, no astronaut, no marriage, no grandchildren.
To cut a long story short, our son has demonstrated much more progress in the 3 years since his diagnosis than he ever did in his early years. I put this apparent progress down to several things. Firstly, he is now able to express himself a bit and has revealed to us that there was more going on inside his 32 month old brain than anyone ever thought (Mozart might have seemed like a pretty ordinary kid if he never had a piano to play on :-)).
Secondly, kids with FX don’t seem to be good at the abstract thought required to pull bits of info together. They need to see the whole thing working together first. So they can be silently soaking up bits of information (like all kids do) but they might not be able to demonstrate it until they have seen the whole thing working. I think that this is one reason why their pattern of development sometimes seems very stop/start (quite a few posts on this list have referred to a “lull” just before their kids take a “leap”). I guess the most likely time for little kids to be picked up and diagnosed would be in a lull when they appear to be developing very slowly.
Thirdly, we have had professional help and support since diagnosis. It is likely that over the next few years your son will make good progress and will learn to do lots of things. As he does, there will be more positive things for your whole family to focus on and be amazed by. You know your life will not be like everyone else’s, but at the moment you probably have no vision of what it will be like, so it is natural to be despondent. When we first found out about our son I was desperate to have someone tell me exactly how his life was going to be (What are we in for?) so that I could prepare to handle it. No one was game to say because of the variability among our kids, among ourselves, among our circumstances, etc. Our family is only a few years further along the track but I thought it might be helpful to start to try painting a bit of a positive picture for you to focus on….It is almost certain that your son will play football, play in a band, dance at a Prom and fly like an astronaut. It just might be football in the park with Dad, banging on tin can drums in the backyard, dancing by himself, and flying through the air as he bounces on a trampoline. I think the trick is to have very high expectations of your son but be able to celebrate his achievements at whatever level they come.
From a Father
When I knew my child was going to be a boy, I felt as macho as any man could. A son means that my name will be carried on. A son means a legacy. It means I can teach him all the good lessons I learned and how to avoid all the mistakes I made. To me, as with many fathers, a son means I can say, “You will go further than me in life- you will be able to do all the things I had only dreamed of! You will play ball for the pros- be a fighter pilot or race motorcycles.” To a father, a son is more than just a child. To a father, a son is the culmination of a lifetime of hopes, wishes and dreams that will finally be realized through the life of his child.Of course this is absolutely irrational, but it’s the way it is. I knew when my son was young that there was something not quite right. He couldn’t catch a football that well. He was uncoordinated and just a little “different”. As he got older, his disability became more obvious. For example, we signed him up for soccer. He was the worst one on the team. The ball would be kicked to him and he would just watch it. My wife thought it was cute. My dream of professional sports died that day.The pain of dying dreams is not easily soothed nor does it go away all at once. When my son was labeled, “learning disabled”, the fighter pilot in me passed away. Every day, in some way or another, I see my son’s disability and when I do I see the remnants of dead dreams. Culturally, most women are raised valuing relationships. They play house and other games where competition is not the central theme. To boys on the other hand, everything is a competition of win or lose. Thus, it is easier for most mothers to have the unconditional love that overlooks their son’s disability. For many fathers, not only are they coping with the pain of lost dreams, but the embarrassment of knowing their son (who represents themselves) will not be the best. Embarrassment is the right word. Watching my boy be the worst on the soccer team, I was embarrassed to be his dad. Isn’t that horrible?! And then I was mad at myself for being embarrassed. This is some of what fathers cope with. Again, I understand it is irrational, but it’s the way it is.To make matters worse, many men do not have the emotional vocabulary to articulate the storm they are in: embarrassment, pain, hopelessness and despair. For men, all these emotions come across as anger. Reading FX books, going to IEPs, reading the listserv and going to Conferences all serve to reinforce the fact that my dreams for my son are dead. Although cognitively I know this is not true, it’s what I feel emotionally and it’s this pain that causes many men to react to their family in a “fight or flight” mode. None of this discourse is to give liberty to or excuse bad behavior, it is just to try to shed some light on what went on (and still goes on) in an FXS dad.
Let me begin by saying that when I see my son Elijah I see a wonderful, funny, enthusiastic, compassionate, bright child–and hope. However, there are days when he is having horrible meltdowns, when he is screaming to high heaven and hitting himself, is resistant to touch, can’t be redirected, and decides to urinate on himself that I begin to wonder what type of future he is going to have. I say this because last week when he was on spring break it was the most trying week we had with Elijah.
It was then that I realized that I hadn’t dealt with what I call my internal cries. Sometimes I cry internally when I am on the train and I see a boy around the age of Elijah who is four and he and his father are engaging in simple conversation and having fun talking about anything. I often wonder are we going to have days like this? I cry internally when I am having a conversation with a parent and they begin by talking about all the great things their kids are accomplishing and the cry comes not because I think their kid is better than mine, but I cry because I see normality. I begin to feel guilty because my soul cries out for it and I wonder am I not grateful for the wonderful son I have? But I quickly come to my senses and ask my self what is actually normal in society today? However, the cry continues when I tell colleagues or friends what Elijah has and I see the look of death on their face as if my son has just died a horrible death. But I soon realize that the look is not of death, but of deep concern and compassion to help in consoling me in the struggle ahead, and that I feel this way because of insecurity on my part. The cry deepens as I often look at my little girl Sara who is 17 months and is advancing well and have said to myself, “God, why can’t Elijah be like her?” Soon my head limps into my hands, and falls into my lap as I realize I have committed the greatest sin comparing siblings, knowing that I marvel at the difference and cherish the complexity of the relationship between Elijah and his sister and I love that my son is greatly different from his sister. Although there have been many days of internal cries, my days begin to turn to joy when I see my son Elijah smile at me and nudge me to play wheel barrow, try to comb my hair, and repeat the very same directives toward us in his own little funny way that we have given him or when he asks for his favorite food popcorn. I have hope when I rise from my daily prayers and have communed with the great father in heaven. In those prayers I find hope and dreams beyond what I can imagine. I really find great joy when his teachers from school write home and say that Elijah had a good day today and that he wiped everyone’s nose which shows his great compassion toward his classmates, or when his teacher calls home and tells us that Elijah has just said three to four words.
This is when I soon begin to realize that I must abandon some of my past dreams and begin to create new ones. Knowing that all is not lost and we can’t write our life script, but we sure can be involved in the movie.
Activities of Daily Living
Daily Living Tips
My son is older but here are some of the things that helped us early on:
1. Socks with different colored heels and toes to help him know how to pull them on.
2. A sticker system on a clock to tell how much time passed.
3. Hanging outfits that matched together in the closet so he could pick out his own.
4. PETS! To feed, and to CALM HIM DOWN. Get a kitten so it learns early to be handled. (But John has always done so gently)
5. Colors, red and blue, on the bathtub water spigots.
6. Vacuum cleaning with the long handle…seems again to calm him down, sure helps me!
One little thing I do to help the boys be more independent in their day-to-day lives is: I put bottles of water in the door of the refrigerator so that when they want a drink of water they can get it themselves at any time. It works! I also rely heavily on a kitchen timer to help the boys through their day. For example, to let them know when they can be finished with a task, or when they don’t have to wait any more. I velcroed photographs of clothes contained in each dresser drawer to the outside of their drawers, so they have a visual cue as to what is in each. Then they are able to pick out their own clothes.
My fast growing son recently moved into men’s sized pants. While he is capable of using a belt, it takes him a long time…Finding ourselves in this new world — he now really needs a belt to hold up his pants — we looked through a number of stores hoping to find an easy-to-use belt. Yesterday my husband went to a Police Uniform Supply store. There he purchased what they call an “Inside Belt.” This belt is worn by police officers to keep their pants up, and allows them to wear a gun belt over it. It’s leather on the outside – but entirely velcro on the inside – so it’s completely adjustable. They even have women’s sizes.
-Pattie and Matt
We have been using an elastic coiled shoestring called WHY TIE. We buy them at Walmart. They look like a coiled telephone cord and when properly laced make any shoe easy to put on and off. My two FX boys cannot tie shoelaces but the WHY TIE allows them to put their shoes on without help.
For their haircuts, my husband Greg, uses the ‘Flowbee.’ It is a small machine, that he bought off an 800# for $80 about two years ago. It hooks up to a vacuum (we use a shop-vac) that literally sucks up the cut hair so there is no mess to clean up. You can adjust the cutting blades to different lengths, for various styles. We have the boys watch a favorite video while they get their haircuts; we have to turn the volume up, because of the noise of the vacuum. They sit on an old office chair that has been jacked up to my husband’s arm level. It sounds complicated, but really isn’t once you get the hang of it. It has saved us a lot of time and hassle.
-Susan and Greg
When we first started cutting his hair we would put him in a cardboard box on the kitchen table with a set of keys and he would be happy for a bit and distracted. Later he would only let ‘mom’ do it and we discovered he loves the clippers so we will let him feel the vibrations of the clipper, do a few cuts etc.
Go frequently (in spite of tears) and often. A lollipop does help in this case. Lots of praise when completed. When they are little, have them sit in your lap, when older, stay by their side. The more frequent, the more familiar the routine gets.
I started taking my son to one of the salons for kids in our area when he was younger and he still loves to go there at 15!…We always go during the day when they aren’t too crowded– never on the weekend!
Try doing so after a bath or shower as the nails are much softer and easier to cut, particularly if you have to tackle the toe nails. We also give Brent something to chew on when we are cutting his nails.
We would clip one hand, letting my son know how many more. Then we handed the clippers to my son so he could “clip” our nails – he would try, it made him feel better and more in control.
Nail cutting used to be quite traumatic in our house, filled with tears and screams. He was a light sleeper so cutting at night was not an option. One day I broke the task down to the smallest step. After each bath, I would cut one nail, only one. When he adjusted to one at a time, we moved on to two, before you knew it I was cutting his nails a whole hand or foot at a time.
Try those strips they have out now that you can put on your finger. Put it on your child’s finger so they can get familiar with where teeth are in their mouth.
Getting a good night’s sleep
SleepWe found little plastic stars that you glue to the ceiling. We put them up in our son’s room. They glow in the dark. Now when we turn out the lights his room is like a planetarium. The stars seem to hold his interest long enough to help him calm down and fall asleep.
Things that helped him: Having a transitional object–he called it a pet. It was Barney until just a month ago. Now we were able to switch him to a stegosaurus dinosaur that he called Steggi. When he wakened I would hand him his pet and that helped him go back to sleep; cuddling up with a down quilt in the winter and a light cover in summer. He needs something over him. His first down quilt had a very heavy cover and I thought this provided SI input. It didn’t seem to prevent him from awakening but it did help him go back to sleep; our bedroom is right next to his and I would tell him that I was “right on the other side of the wall.
Simon (now nearly 15) sleeps in a box. It’s something he came up with about a year ago, on his own. He found a rather large box, turned it on its side, put it at the head of his bed, stuffed it with pillows, and draped a blanket over the top…Every night, he lies down, sticks his head in the box, and goes to sleep. And now he rarely wakes up screaming.
Blacking out the windows
I put black construction paper on the windows in his room so it was completely dark and immediately he began to sleep in! Now that he is a little older, I still have the windows blacked out by shades and mini-blinds but I do allow a little light to come in so that he knows it is morning.
We made simple cotton curtains and I sewed the blackout fabric on the underside to filter how much light can come through. We also have a room darkening mini-blinds set. With only the mini-blinds the light still sneaks through. The addition of the curtains helped.
I went to the fabric store and purchased a material called blockout or blackout. They have two thicknesses. I bought the thickest one. I measured the curtain and bought that amount, sewing it to the back of the curtain. You could just tack it with thread and needle if you don’t have a sewing machine.
Layer sheet sets (plastic mattress cover, mattress pad, fitted sheet, then a plastic cover–not the zip up kind!– repeat, mattress pad, fitted sheet) for several layers. Then when the bed is wet at 2 a.m. all you have to do is peel off a layer and voila! a clean dry bed awaits! Sure, there is a lot of laundry the next day, but you can return to sleep very quickly so you’ll have the energy to do the next-day’s laundry!
Anxiety and Calming Techniques
Fight or Flight
Sometimes what looks like aggression is actually anxiety. Before receiving the FX diagnosis for our son at age 21 months, I never thought I’d have to worry about anxiety in my child. Anxiety, hyperactivity, hyperarousal – you read these terms in FX literature, but they seem to blur at times. All three of these problems are intertwined in FX. They have overlapping symptoms and signs and they often exist to varying degrees at the same time. Often it may be hard to define which problem or combination of problems is driving behavioral dysfunction in FX. When we were discussing [my son] Andrew’s behaviors, Dr. Berry-Kravis said something that really helped me. She said “virtually all affected by Fragile X Syndrome have both anxiety and hyperactivity, but one runs the show. At a young age, it is sometimes hard to see which runs the show.”
-Mary Beth with assistance from Dr. Elizabeth Berry-Kravis
The thing that is most disabling about Fragile X for my 15-year-old son is the anxiety. It really affects what we do and where we go to a great extent. When he was younger, I was less inclined to try new things for fear of a meltdown. However, as he got older I realized just plowing through something that caused him anxiety was the only way to lessen it. We would go to movies not planning to stay, festivals where we never got through the front gate, malls where we practically ran through the stores, all practice runs for the real life we wanted him to be part of.
My daughter was born in 1995. At the time we had never heard of the term “Fragile X”. We did not have or know of a family history of any genetically inherited conditions. What we did know was that by the time she was three months old, we had an extremely shy child on our hands…We saw a child who was profoundly affected by large places, commotion, noise and strange faces. She could not make eye contact with anyone but my parents, my sister, and David and me. This continued throughout her first year of life, and she didn’t outgrow it. In fact, it became progressively harder to take her anywhere…We took her to doctors. No one had an answer for us..As Bailey turned five, we were expecting a baby. Becoming a big sister started to build Bailey’s confidence and, in Grades 1 and 2, she was blessed with two teachers who took her under their wings and created a comfort level that allowed her to begin to express herself to others. During this time, we discovered FX in our family and our girls were both diagnosed with a full mutation. As I started to research FX it became very clear to me that the source of Bailey’s anxiety was the manifestation of FX in her little being.
At the age of ten, Bailey is now very articulate. She is able to explain that laughter makes her feelings hurt deep in her chest. That too many people in a room make her feel overwhelmed. That happiness, sadness, fear and anxiety are very real and very extreme.
It is my belief, that for these girls, their senses are so heightened that everything they experience is much stronger than what we feel. She has a great capacity for love and compassion, but she is easily frightened by the unknown and doesn’t work well out of her comfort zone.
The good news is that with age come coping skills. Bailey can now set her own boundaries and knows her limitations. This past January, Bailey and I went to her first concert. It was Hillary Duff, and let me tell you, it was LOUD! She rocked along with all the other ten-year-olds and beamed with a smile I will never forget.
Techniques for Calming
What we have discovered is that David, 12, will use his headphones and CD player whenever he needs to calm himself. He turns the volume up very loud, holds the headphones to his head, and nods his head to the music. At first I was very concerned, but a PT friend of mine explained that he needed to do that because he has so much commotion that he hears (similar to ADD kids), that he has to hear just one thing to calm himself. After I gave it some thought, it made sense. His music is very portable, easy to use on the school bus, easy to use anywhere.
Jumping is a great calming technique for David. Any heavy work or exercise works as well, but a full-size trampoline is fun!
Activities for Calming
If your child is like our son, he’ll have no difficulty telling you if something is too difficult or uncomfortable for him. And that’s OK. The idea is to start small and work up his strength and his tolerance.
Here are some ideas for the proprioceptive system:
1. Wheelbarrow walk around the house (Your son is upside down, ‘walking’ with his hands while you hold onto his ankles).
2. Pretend you’re making him into a ‘sandwich’. Place him lying down on a pillow and place another pillow on top of him. Gently apply pressure. The idea is to give his muscles the input from the pillows and the pressure. Then switch – let him apply pressure to you.
3. Wrap him up in a blanket – some kids love it (mine does); others HATE it.
4. Consider a mini-trampoline. I never felt that it was safe for my son because of attention and balance problems. However, other people swear by them.
5. Pretend you’re going shopping. Have him carry around some heavy items or a plastic shopping basket filled with a few items to give it some heft.
6. Place marbles in modeling clay and have your son try to dig them out.
For the oral/motor you may want to try:
1. Popsicles. Encourage him to lick and suck on the popsicle rather than bite it.
2. Use straws whenever possible. See if he likes to ‘drink’ pudding or applesauce through the straw – great for oral motor.
3. Lick peanut butter off a spoon or plate. Or have him lick pudding off a plate.
4. Encourage him to eat crunchy foods.
5. Consider an electric toothbrush.
Lastly, get him out on the playground as much as possible. Encourage as much hanging, sliding, running, jumping and swinging as he can do. Have fun!
Curly Straws and sour drops
One tool we used for calming is a long, curly straw. The child has to suck so hard to get the drink up through it, it takes all of their energy and focus. I hope some of this helps. I know how hard it is to deal with anxiety issues. In fact I would suggest it is one of the most, if not the most, difficult things with Fragile X.
Sometimes we offer our son a sour candy, such as a lemon drop or sweet tart. The tartness draws the focus to it and thus calms. Having a calming toy in his pocket that he can use to focus on is another idea (our son used theraputty and a small foam ball). This worked extremely well for situations where he had to go into a large group or new situation.
You mentioned you were using surgical brushes for the brushing technique. You might try “corn brushes” (used to clean silk from corn) – they are the same consistency and work just as well. They are available at kitchenware stores at a much cheaper price. We bought one for each of us.
One of the great things I learned is “The 5 Finger Approach” by Tracy and Mouse.
Here’s how it works (from the worksheet we brought home).
Assign each of the 5 fingers on your hand an activity you can complete to relieve overstimulation:
1 – Quiet: find a place to get away from stimulation; a small sensory-free zone – under a box, a tent, even just under a blanket; make fidget and oral inputs and music available in this space.
2 – Breathe: breathe deeply – in through your nose and out from your mouth.
3 – Chew: and suck and blow! Busy mouth = calm self.
4 – Deep Pressure: try self-delivered hugs, pulls, squeezes, jumps; wall and desk pull- and push- ups; “pillow sandwiches”.
5 – Engage in Movement: use a slow, rhythmic voice to calm; swing rock – engage in a rhythmic, repetitive and calming movement activity. Keep the hands busy – fidget and focus – busy hands = quiet body.
weighted vests or blankets
Some children with Fragile X find the deep pressure of weights and weighted clothing to be calming. Things such as ankle weights, wrist weights, a weighted vest, etc. Andrew often will draw a bit longer and is more calm while doing so if he wears ankle weights while standing in front of an easel.
There are many catalogs with deep-pressure clothing and weighted clothing and blankets, but these items can be expensive. I made a weighted vest for Andrew using a fleece vest and evenly sewing on a number of metal washers at the bottom of the inside of the vest. I mean the type of metal washer which is pretty flat, comes in different sizes/weights and has a hole in the middle, which made the sewing very easy. I asked an OT how much it should weigh for Andrew at the time and bought enough washers to add up to that weight.
For a weighted blanket, you could use a blanket or beach towel, something heavy enough to withstand the weight and sew the washers on one side and you’re done. OR if you don’t want the washers showing, sew another matching large beach towel (or blanket) on the other side of the washers. (Because the washers have a hole and I just sewed simple stitches around them, the pattern on the other side resembled a sunburst or flower, if this makes sense.)
Call around to some dentist offices and see if they have any old x-ray vests, they work really great! When they wear the dentists don’t like to use them anymore and our dentist gladly gave us a boxful. They may not be the most attractive thing you ever saw but they more than serve the purpose and are free. They are a nice even weight too!
1. Providing choices throughout their day, so they feel they have some sense of control in their lives. For example, the teacher could give him a choice of activities to do rather than forcing one.
2. Increasing the types of activities he prefers, using items and subjects he is especially fond of. My son loves anything to do with space. Give him a report to do on the space shuttle and he’s in heaven!
3. Giving short breaks, especially during tough periods. Ideally, he can learn to ask for a break when he feels himself getting tense or anxious. This could be a short walk in the hall, a 5-minute turn on the computer, whatever will make him feel more relaxed.
4. Providing lots of visual supports, such as a picture schedule. Transitioning from one activity to another often causes lots of anxiety. Knowing what will occur in the next 5 or 10 minutes or knowing he will have to stop the present activity can often reduce stress.
5. Providing sensory input: having a small box of sensory items, such as a Koosh ball that he could use during the day that would not interfere with his learning.
6. Using social stories to help him learn what the preferred behavior is.
Regarding our children and the problem that some have with noise, especially in the car, here are the suggestions [our speech and language person and our cognitive specialist] offered:
use earmuffs or ear phones
use foods that take some time to get through (i.e. string cheese)
use Bazooka bubble gum, 2 pieces
allow the child to watch cartoons in the car
have activities that the child likes, but can ONLY do in the car (no exceptions)
Where I live they have a huge support group for parents for children with autism spectrum disorders. Occasionally, they all get together at a local theatre and have a special viewing of a new movie specifically for kids with special needs. The theatre isn’t as dark as usual and the sound is not as loud.
Nick has adapted by covering his ears, wearing hats or hoods, and most recently wearing ear plugs. My daughter is active in sports, so we spend a lot of time in gyms and arenas. We have always taken the boys, and for the most part they have gotten used to it, and deal with it quite well. Thankfully the sports started out young and mild, and gradually worked up to noisier and more intense. The same goes for musical concerts and plays at school. They have been eased into them, and now they love them!
In order to help decrease the noise for our kids we bought them ear protection headsets from the local sporting goods store. Each set was about $15.00 so they aren’t expensive. They are the same protection headwear that people use at target practice… I keep a set in the house and a set in the car.
What helped Christopher was gradually exposing him to big noises and telling him what was going to happen before it actually did. It wasn’t a surprise then and he seemed to get used to noises over time.
We, his parents and older brother, have found that the right medication and acting like border collies works for us. We can lead and loop back next to him; he will eventually follow. It takes a long time. Direct conflict always, always, always ends in misery for all involved.
What works for me now is: I say. “It’s time to brush your teeth. Please brush your teeth now.” He says everything he can think of, related or unrelated to brushing teeth. I tell him that I can’t talk to him about anything until he brushes his teeth. This is the only thing I say to him until he gets bored and brushes his teeth. If I slip up and let him engage me in this “conversation,” it could go on for hours.
When it comes to leaving the house (which he hates), I say I am leaving now. You need to come with me. (no, no, no, no, no!). I am going out the front door. I am getting in the car. You need to come with me. Then I go out into the car and wait as long as I need to. Raising my voice is the worst thing I can do. But I’m not super human, and if my patience is shot, and the border collie barks, we start all over, except I’ve got a very hostile person I’m trying to lead. I always regret raising my voice. Also, at 18, he can drown me out completely.
This is the best I’ve been able to do after 18 years. And, I’ve got to say, despite our kids having a developmental disorder, they do continue to develop. James is a whole lot easier to deal with at 18 than he was at 8.
Biting and Chewing
When do kids bite?
She bites when she is scared.. anxious…excited. Basically, biting is a big part of how she copes with her daily life. Biting makes her feel safe. Biting makes her feel less anxious. Biting helps her escape and biting feels good.
I find that the times when he bites others are when he is overstimulated (rough play) or when others are in his face. He also likes to bite on his clothing when he is excited.
Biting would occur when he was overstimulated and needed to center himself.
What works one day may not work the next, but we have to continue to be consistent with our reaction to her biting even if she isn’t. The most important thing we have learned is to NOT LET her “get that bite in.” If we see our daughter escalating and going into the “bite mode,” we distance ourselves from her and try to distract her and get her mind off the biting. The key is to not let her get the reinforcement of the bite and then get her mind totally off the situation at hand. It’s not as easy as it sounds. We do not tell her “no biting.” Rather, we say “Oh, I see that you are upset/mad/excited. Do you want to chase/have a pillow fight etc?”
I have found the best thing that works for him is a chewy tube. He is able to get the oral stimulation and feedback that he needs and he does not bite others or his clothes when we give him one. If and when he does bite one of us, I put him in Time Out and tell him “we do not bite” and that he has to apologize to the person he bites. When he was younger, I don’t think it really sunk in, but now, he shows remorse and knows that he has done something wrong.
My son’s PT at school got him what I call a chewy. It’s a piece of blue rubber tubing. It works great!
When our FX son Dan used to chew holes in his shirt, we tied a “bandana” around his neck and he chewed on that instead. It saved the shirts and we had several to switch around as needed. Also, we could re-roll them so the holes were in different spots.
What I am using is a translucent flexible plastic key chain on a chain around his neck. It is flexible-chewable-and he seems happy with it.
We have bought hospital tubing from a medical supply store (the kind that is wrapped around your arm when blood is drawn) and cut it into pieces about 5-6 inches long.
One thing that has helped somewhat is the tall water bottles that have the hard plastic straws in them.
A rubbery football mouth-guard, which he will use instead of his hands.
We gave [our son] lots of socially appropriate replacements like gum or straws to chew on and gradually he stopped chewing on his clothes.
Why do people hit?
He would hit when he was overwhelmed with a situation, he would hit when he didn’t get his way, he would hit his brother for just being loud and startling.
My 15-year-old son’s hitting occurs most often when he is anxious.
About a month ago we began to prompt him to clap his hands together instead of hitting. It is helping a lot. First, his hands are always with him (obviously) and second, clapping provides him with sensory feedback similar to hitting…The clapping thing provides him with a chance to make “good choices.” Then he receives praise, which always works better with him than punishment.
When I see all the signs, I start getting into my defense mode. I stay close to him, but not in his face. If we are around other people, I remove him from the situation immediately! I will stand beside him and put his one hand around my waist and hold the other arm to his side while we walk out quickly.
“No” just doesn’t work, it’s important that you teach what is appropriate, i.e. hands are for helping, hands are for hugging, etc.
When they do hit
If he does hit, we always take him to a time out.
If the hitting happens to someone else before I can stop it, I apologize, quickly explain the problem and make a hasty exit. I don’t try to make him apologize because that only escalates his anxiety at this point. He does get consequences for hitting–no TV or Playstation for an afternoon–but I try to remember it is a side effect of his anxiety and not intentional.
Hands in the Pants
The one thing I noticed with Pat, 12, is that now that we make him keep something around his neck to chew on (instead of his shirt) he doesn’t spend so much time with his hands in his pants.
We haven’t found anything to avoid it but have used the following method to get him to stop. We first started with the ‘keep your hands out of your pants’ and found that it only drew attention to him. Then we used the following: say ‘hands up’ and we would hold up our hands. At first he thought it was sort of a game like cops and robbers, but he eventually caught on that it was a way for us to remind him that certain things are done only in private. After he got used to that, we devised two methods to remind him to stop when he is doing it:
1. If he looks at me, I can just slightly hold up my hand and he is reminded
2. If I don’t have his attention, I can just quietly say ‘hands up’ and he is reminded and no one else knows what I mean unless they have noticed him.
Instead of constantly repeating, “Take your hands out of your pants,” say “Go wash your hands.”
Dealing with the Outside World
My daughter, Maddie, is 6 years old and we have used social stories consistently…
We first heard of them when we had our appointment with The Fragile X Clinic in Sydney. The people send a social story as part of the routine for each appointment. It contained a simple story with photos of all the therapists and their rooms and the routine that Maddie was to follow during the day. We read the story to her a couple of times a day until she knew it off by heart. She took it with her on the day and pointed to pictures of the therapists as we saw them. It took the anxieties away about the new places and people and made the experience, for all of us, much easier, and less stressful.
We have used social stories for dentist and doctor visits, a hospital stay and the first day of school. We use the internet for pictures as well as photos taken on our digital camera. Social Stories take the ‘unknown’ away from situations that can sometimes become overwhelming for some of our kids.
We use a “Wait card” which is simply a card that has the word wait on it with a small picture of a clock in the corner…I simply let her hold the wait card until it is time for the desired activity, i.e., waiting until all siblings have their shoes on to go outside, waiting in line at the store. That being said the wait card only works if the time increment for waiting is short. I also have a card with a big stop sign on it for when I want her to stop something she is doing. Both cards are discreet visual reminders of what she needs to do.
We play I Spy a lot, he actually asks to play it. We bring a “bag of tricks” everywhere we go. It has changed over time from mostly snacks to games like memory games, I Spy, and coloring in what he wants me to draw for him. Lollipops are not given a lot in my home but are a great waiting tool. Books for my son are great, but I need a lot ready to go…Puzzles work well too.
Waiting was a goal we had written into my son’s IEP many years ago. It’s a social skill, and he practiced waiting in line for lunch, waiting his turn on the playground, waiting for his turn in gym. Successful waiting was rewarded. It was an all day every day part of his school program. Social stories were written to reinforce everyone’s need to wait and take turns–even if it’s hard.
Visiting the Dentist
Dental work is often difficult for kids with Fragile X (and many other people). Dentists often recommend sedating kids to get work done and there was discussion of the best medication to use. Several families report success with Sodium Brevitol. This should be discussed with your Dentist.
I would highly recommend a Pediatric Dentist. The office is set up with kids in mind. Our dentist has Game Boys and videos running. The kids wear sunglasses to reduce the glare of the light. Matthew is always given something in his hands to fidget with. At first, they would just brush his teeth, but after several visits Matthew has a full cleaning!
A trip to the dentist/doctor can create a lot of anxiety for our children..What can you do to reduce that anxiety? Take away some of the unknowns. Don’t make their first visit to the dentist/doctor be a visit where they actually have work done. Visit the office beforehand. Take pictures and create a social story. If possible, make occasional visits to the dentist/doctor on a regular basis. Get your child more familiar with the building, the environment. You could stop in for 10 or 15 minutes, say hello to the nurses, read a book in the corner, or play with any games in the waiting area. Maybe the nurses/assistants could provide a sucker or sticker when you stop in…Austin has two younger sisters, and bringing him along for their checkups helped…Playing doctor/dentist helped immensely. In addition, for a short time I had Austin get shots during separate visits so he didn’t associate trips to the doctors with always getting shots.
Look for and use children’s videos/books on going to the doctor or dentist. For example, “The Wiggles – Top of the Tots” has excerpts on dentists, doctors and much, much more. Let your child play doctor and role-play going to the doctor in front of your child. During visits, take a favorite toy or stuffed animal with you, and have the doctor check the toy first. The more you prepare, the better.
I Found a little thing that helps out with a difficult transition time: it has been getting increasingly difficult to get Mitchell (age 2 1⁄2) to walk from the car into the preschool – a good 100 feet walk…I picked up a rainbow colored plastic [slinky] for a couple of dollars – and it works GREAT! Mitchell holds onto one end and I hold the other – I walk along first and he loved it. It stretched out between us and then he would ‘run’ towards me and I would back up more and so on, all the way into the classroom.
We used to have terrible times with Timmy (now 12) when we would go places and it was time to leave. We would warn him we’d soon be going, etc. but eventually one MUST ACTUALLY GO. So when the moment arrived, we’d head for the door, dragging the crumbling rag doll darling along, as he clawed and screamed and kicked…When Dr. Hagerman was here a few years ago for a conference, I posed this dilemma to her. She said that often, they found that if one just went ahead and left (leaving the child behind) he would just come along in short order behind you. This seemed TOO simple. But we tried it, and sure enough, he’d come along (grumbling and snarling to be sure, but without incident)…This works 99% of the time, if we have not allowed him too much deterioration before the leaving point.
When my two FX boys were little it took tremendous effort to get them to stand still and be quiet. During shopping trips they would try to run free and I realized that I was spending more time chasing kids and calling them back than I was shopping. This multiplied the effort I put into shopping by several times. I was tempted to just walk out of the store and come back later.
Then I realized something significant: my boys, even though they have a learning disability, do understand a lot. I came up with a strategy I call “PLANNED FAILURE”.
It goes like this: Since it is difficult to continue shopping with screaming kids, and is too time consuming to drop everything and re-shop later, I would occasionally make a PLANNED FAILURE shopping trip. That is, I would go to the store with a very small list of non–essential things. This would allow me the freedom to say “If you boys don’t stop making noise we are going home.” Of course, they would continue to make noise. Then I would take them home. No matter how much they promised to be good. The next time we went to the store they believed me when I said they should behave.
It was not as simple as I have made it sound; it actually took many trips, with some improvement each time and the occasional “refresher course”.
It also works in the car. If the boys were wild in the car I would take them home, get out of the car and go in the house for 15 minutes. I would let them think that we were done. The second time we left the house, I would tell them the rules: “If you make noise we’re going home.” “If you cry, we’re going home.” The boys were better behaved on the second trip. I would also make it a point to repeat the rules when we were driving past the same spot where we turned the car around.
Small children get three warnings, older children get one warning. The fewer the warnings the better, (but give at least one)
Another thing that helped in our home was to set up a chart around difficult events. If the child was successful they were able to put up a sticker, which could later be redeemed for an ice cream, pizza, etc. I know it sounds like bribery, but I’d rather deal with positive reinforcements than negative cycles. My son is now a young adult and though he still has occasional mild problems with change, he has made tremendous growth in this area.
One thing that has been shown to help kids with Fragile X is a visual cue. You might try drawing a series of pictures showing you leaving him with the therapist (or whomever) one of him with her, and then another when you pick him up (with a big smile on his face). Stick figures work great and he could even help you draw them. Then show them to him through the week before the appointment, again before you leave home. Have them with you when you get him so that if trouble develops you can quietly pull them out as a silent cue.
In my experience there are two ways to deal with it:
1. You can say “it’s time to go” and pick him up and leave. The advantage of this is that you have the control and (hopefully) eventually he will realize that fussing won’t make a difference – you are still going to go.
2. The therapist (or you) could give him a job to do. For example, the therapist could say “I need you to give this letter to your mom in the waiting room. It’s time for you to go.” Children often really enjoy performing tasks like this, and it allows you to direct his behavior without him feeling like he has lost control. My favorite is the approach of you (mom) giving him the keys to the door and saying “It’s time to go now. Go open the door.” This makes him feel important (of course, you lay on the praise as you help him unlock the door) and it also allows for a transition that does not make him feel like he has lost control.
One of the things we did when our sons transitioned from one school to another was to go to the school and take pictures of things there. We took pictures of the classroom, the teachers, the principal, lunch room, even the bathrooms. We put them in a scrapbook with titles and read it and talked about it often. It seemed to help our sons feel more comfortable about the move. We would also go the school before school began and walk around the building several times. We’d meet the teachers and get acquainted with the rest of the staff. Finding out about how the teacher schedules the day and sharing this with your son may help also. Another idea might be to have a small item that your son can keep in his pocket and reach for in times of stress. He doesn’t even need to bring it out, but just have it there to touch and focus on. We’ve used a small piece of theraputty for our kids. Others have given their child a ring or smooth stone they can hold when they feel overwhelmed. It sounds crazy, but it can help to have something to ‘center’ on. The classroom teacher would need to know ahead of time about this. Anything you can do to make the transition less threatening is terrific. This is also true for the classroom teacher. Being open with the staff and sharing as much as you can about Fragile X and your son’s needs are extremely important. I believe in ‘most’ situations education (of others) removes a lot of fear and makes people more willing to help. My children are all young adults and transitions are still difficult issues for them.
Explaining the differences
How do you explain to another child who asks why your child is different? My own daughter has asked me the very same question about her brother. This is how I have defined different.
We are all different. Some of us have blue eyes, some of us have brown…Sometimes our parts didn’t get put together just right, some people are deaf and can’t hear; some people are blind and can’t see; some people may have legs and can’t walk. Just like things we can physically see there are many things we can’t. Our brain tells us how to see, feel, hear, touch, and smell. Important switches in the brain that should be turned on are turned off and some that should be turned off are being overloaded…Being blind, deaf, crippled, or having Fragile X Syndrome, Down Syndrome, or Autism is not something we choose, it’s just something that happens. When it happens, it makes some people very special because they have many challenges they may have to face just to do some of the ordinary things you and I can do. Austin may see things much differently than you, lights and colors may be much brighter, sounds may be much louder and not as clear. Sometimes their brains are overloaded with everything they hear, see and smell. Little noises you may not hear, like the fridge running or the fan spinning, might be running like a train through their heads.
First and foremost, Austin is a kid just like you. He wants to play, he wants to have friends, he wants to be loved and he wants to be recognized for those things he does well. Austin has Fragile X Syndrome and Autism, which makes some things very difficult for him. There are many things he can’t do that you may have been doing for a long time. It doesn’t mean he wouldn’t like to do them…Sometimes Austin is very frightened by things that are new; a new place, a new person or a new experience. He has a hard time telling us what’s bothering him or what’s scaring him. When this happens, his brain might be overloaded and his way to tell us or let it out is to just scream…All I ask from you is to think about what it would be like if you were like Austin and how would you want people to treat you.
You are a key player in increasing awareness, putting a face to this syndrome and educating others. “What is Fragile X?” business cards (which you can buy from FRAXA or create yourself) are a great tool to assist us in making Fragile X as well known as autism. For the layperson just telling them that Fragile X is a genetic condition, often with similar characteristics as autism, will be enough.
Explaining to other children
This year my husband brought a basketball, a football and a soccer ball to school. He put each of them on out on the desk and asked “Which ball is best?” The children, fourth graders, eventually concluded that no ball was “the best.” Each ball is good at different things, each ball is unique, but each ball was still a ball even though they were different. It was a great illustration for the kids and they understood it.
Stephanie and I took our 3 kids – including our two sons with FXS – to Disneyland, and we were able to obtain special needs passes at the office which enabled us to skip all lines. We had one of our brochures with us that explains Fragile X and just showed the person that, but it was hardly necessary as she was warm, supportive, and not ‘questioning’ at all as to the assertion of the condition. We did find that some of the staff at particular rides were less than attentive to our coming up to the gate with the pass, so we had to be somewhat assertive at times – actually Sam and Ben took care of that – but, all in all, it was a wonderful family experience. Especially after I went back to the car in the 10,000 acre parking lot to get Sam’s Elmo doll!
As our kids seem to love videos for the most part, we had our relatives from out of state make a video of themselves doing everyday activities and talking to Brandon. He watched it so many times that he started to know their names and was familiar with them when we did get to see them. It also helped getting him ready to go visit as they also videotaped their houses, inside and out and it helped him get prepared for where we were going to stay during our visit. We also made a little book having each relative stand in front of a back-drop that was solid so as not to detract and putting only one person per page of the book. He learned all their names and faces by reading this book again and again. Something that has helped us in almost all travel situations or new situations is to bring along Brandon’s portable tape recorder and let him play his favorite music during otherwise stressful times…seems to help comfort him a great deal… Another tip for travel is to bring as many familiar things from home as you can. I even bring Brandon’s sheets to put on the bed he will sleep in at Grandma’s to help things seem as familiar as possible. Something as simple as the sheets made a huge difference in his sleep while we are away visiting.
We used to have a terrible time on airplanes, but several things have helped for us. We always go to the airport before the trip to watch the planes and talk about that we are going to do. We bring lots of snacks that we usually don’t have: candy, pop, etc. I go the Dollar Store in advance and buy several new little distraction items to pack for the plane, and I have heard of someone who wraps them all up so the kids have something to open every 15 minutes or so. We made a tape of our little one’s favorite songs repeated over and over and brought along some headphones. We first had to get used to wearing the headphones, so we started practicing several weeks in advance. Finally, he was able to listen for about an hour on the plane… what a life- saver!
I devised a plan. The first part of the plan involved going to the airport, walking through the steps we’d have to take for our trip and taking away some of the strangeness. [We] began the adventure at U.S. Park. Everyone enjoyed the extra bounce in the airport shuttle’s seats and the fact that every seat was a window seat.
The next form of excitement came with the journey on the escalators to the ticket counter. Isn’t it amazing how fascinated kids are with escalators? Well, we made it that far, so my next step was to determine if it was possible to go through security.
We waited in the check-in line and explained to the Northwest ticket agent what we wanted to accomplish and why. I explained that Austin had Fragile X syndrome and autism (I always add the autism because people understand it better than FXS).
She contacted a supervisor. The supervisor arrived and contacted a manager. Austin walked in continuous circles as we waited for the different levels of management to arrive. He made me dizzy just watching him. I let him pace. I realize he does this when he is anxious; it helps him remain calm. I responded to stares from other travelers with a smile, hopefully relaying the message that, yes, he is “different,” but it is OK.
When the manager arrived, I again explained what I wanted to accomplish. He provided us with a special pass so we could go through security. The supervisor escorted us to first-class security check in, where we proceeded to remove our shoes and coats and place all of our belongings in bins to go through the X-ray machine. We all walked through the security gates without a problem. Next, each of us had to stand on mats with footprints while they used the metal-detecting wands on us. Austin went first; I was so proud of the way he followed instructions. Genevieve made Natalie and me laugh; I wish I had brought a camera. Her little legs were spread so wide and her arms were out like airplane wings. Then it was time to gather our belongings, put our shoes on, and begin the next phase of our adventure.
Watching the children’s faces light up when we rounded the corner from security made all the waiting worthwhile. Another escalator to ride, stores everywhere, a train inside the building, the fountain randomly spouting water, and sidewalks that moved. We tried to experience as much as we could with me trying to teach a little airport etiquette while riding the moving sidewalks and trains. It was a wonderful adventure and Austin’s success on our trip will be possible because of our journey. Everyone couldn’t wait to return home to show their friends the pilot’s “wings” they received from the kind ticket agent. As for me, this isn’t the first time I’ve earned my wings traveling with children.
A very long time ago, I took my oldest son, Jon, now 24, on a vacation to Las Vegas to visit my sister. This trip had a purpose, as well. It was a practice run to prepare Jon for a flight he would be taking alone. On the flight from Chicago to Las Vegas, we intentionally didn’t sit together. We were both in aisle seats and he sat in front of me. During landing he was airsick and there was nothing I could do. A kind gentleman heading to Vegas with adults to have a little fun without children was one of the best unexpected caregivers I have ever encountered. I’ll never forget his understanding, his compassion. He, on a different level, truly earned his wings that day.
I have tried exposing my son to as many new experiences as possible while he was young. This went a long way. He transitions well, loves to go to new places and has learned a lot. He can now find his way to restrooms, open hotel door rooms, handle luggage, pack, money, speech (he can practically check in – he just can’t sign a credit card) and read basic signs. A hotel with a pool and/or hot tub is a great idea.
When we found out the diagnosis, and heard how some kids couldn’t handle open spaces, like the beach, we made sure that was where we were going. Make as much effort as possible to attend free concerts, shows, restaurants, ride a train, get on a bus, a plane, go to a museum, or stay at a hotel. Just be sure to have a back out plan – you may need to leave a show or just stand outside for a few minutes. You’ll need to talk about expectations before and give reassurances during. If it fails, wait a while and try again. While it’s acceptable for a young child to have a meltdown, it’s not so acceptable when they get older. Desensitizing to sounds, new experiences and new places will go a long way to a calmer child and later adult.
One warning: take it in steps. A free or local concert before going to a big one. A small amusement park before Disney. A plane flight to a fun place before a plane flight to a doctor.
If you had asked me five years ago if I would be traveling, by plane, alone with my son, I would’ve thought you were insane. Yet, during the last five years we’ve redefined our “normal.” It took time for us to realize that our “old normal” wasn’t working because we weren’t living life to its fullest, and it wasn’t productive, for any of us.
Moving on, embracing a “new normal” has made numerous things possible. I wonder how many opportunities would’ve been missed without the change. How is your normal working for you? I wonder what are you missing?
Karate, in the right setting, is a great individual sport, teaches self defense and in a lot of ways can be like an added PT or OT session. Find a non-competitive karate studio and start your child when they are young.
Our 9 year old son Michael loves swimming but we spent about 3 years getting here until we discovered he needed:
1. A hot or at least very warm pool (hydrotherapy or bath temperature). This is very important as there probably is an SI thing. I don’t like cold water either.
2. The right instructor – empathic, warm, gentle, patient+++, able to go one very small step at a time, spend just a few minutes doing one thing, then something else … present it as a game etc.
Let your child hang onto your neck until she gets used to it and bored. This could take literally weeks but don’t give up. The end result is worth it. Michael can now dive and snorkel, float and when he does freestyle looks like he’s drowning but now he loves it so much you can’t get him out of the pool. He has also just started swimming underwater in very cold water and continually amazes us. Keep trying different things and it will happen.
– Dr. Jonathan Cohen
To teach any kid to swim easily, I have used the following strategy: We all like to be held securely, right? Especially in scary situations like unfamiliar water! Buy a swimming ring that fits snugly around the child. It should be tight enough that they can’t slip out, yet leave plenty of room for arms to paddle and splash. Just encourage them to get in shallow water and play with the ring on. Try to move them a little deeper each time in the water, but always with the ring. Next, as they are comfortable, and forget about falling underwater (because they have learned the ring will keep them afloat), let a TINY bit of air out of the ring when they are not looking. Each week, lose a little more air. Without realizing it, arm and leg movements will compensate for the loss of buoyancy from the ring.
Fear of Falling
My son was afraid of falling. So I told him I would tape him on the bike! (he liked tape at the time). So, I took scotch tape and rolled a big piece up and put it on his rear, and he sat on the bike… I said Okay guy, you’re safe, the tape will hold! He rode and did fine! We never used the tape again!
We had tremendous success with a bike. At 11 David is riding a mountain bike with gears and it can practically bring tears to my eyes. What a sense of accomplishment he shows. We started with a small bike so he was comfortable. Of course it had training wheels. We rode as a family so there was that motivation. Also, I arranged get-togethers with other kids to ride bikes. There is a great new item called an Alley Cat. It is designed to fit on the back of an adult bike. It is a wheel with pedals and a handle bar. The child actually pedals and holds on, but the adult does most of the work. It’s kind of like a tandem bike.
As small children, I felt it benefited them to get outdoors. Bike riding seemed to relieve stress and made them physically tired, an added benefit since they slept better which gave my wife a break. Biking has made them more independent; they are willing to put out the effort to pedal to the pool, McDonalds, the park, or the supermarket rather than getting in the car. They never ride alone; one adult is always with them. Both boys have learned to follow rules like “drive on the right side of the road,” “stop at stop signs,” and “look for cars.” They also know how to operate a crosswalk signal.
Babies and Toddlers
I think it’s hard for them to interpret their bodies’ signals. What Pat’s school behavior specialist suggested, and this worked, was to have Pat watch my husband peeing standing up, and also to find a squirt bottle, fill it with water, and have him squirt in the toilet, like pretending to pee. These visual things helped a lot.
Potty Training in a Weekend
This is a procedure that worked for us. We did it over 2 days when our son was 4 1⁄2. You have to decide when it’s right to try it with your child and if and how to modify the procedure. If any step seems too simple or too advanced for your child don’t hesitate to make changes. Be creative and make it FUN and hopefully it will work. Keep in mind that: FX Kids are visual learners and FX Kids have excellent imitation skills and can mimic well.
*Check “Toilet Training in Less Than a Day” by Nathan Azrin and Richard Foxx and Videotape “Once Upon a Potty” out of your local library.
*Arrange for a weekend alone with your child (book says one day…you’ll probably need two). Have siblings sleep out.
*Stock up on salty snacks like pretzels and potato chips and your child’s favorite drink. Also, get a real special treat for successes. Don’t worry about healthy foods.
*Have at least 6 changes of underpants on hand.
Introduce the subject 1 or 2 days before to create excitement for the weekend together.
Start the morning with the Videotape. Learn the song with your child and sing it throughout the day.
Start the child drinking his favorite drink and as much of it as you can get in. Give as much of the salty snacks as they will eat to make them drink even more. This will maximize your opportunities for success. Keep that bladder full.
Break down going to the potty into very small component parts i.e. getting up off the couch, walking toward the bathroom, arriving at the bathroom door, walking in, lifting lid, pants down, sitting on potty.
You are the model and begin by doing each step yourself to try to get child to come along. Decide in advance who is going to be the model throughout. (It should be the person with the most patience). Each step the child does after you should be greeted with WILD praise. This will soon become a fun game and you will get into the bathroom and on that pot. Once on the pot if you have filled that bladder it shouldn’t be long until a success. Greet that with WILD, WILD praise and give the real special treat (whatever your child fancies i.e. a toy, food, sticker or whatever really makes them happy.)
After a success or if the child wants to get off the potty, go back and watch the video. Continue with salty snacks and the favorite drink.
Time to begin Dry Pants inspections. Whenever you’re not in the bathroom check the pants often. If they’re dry that is cause for more WILD CELEBRATION.
After the video and even during, begin the step-by-step trek back to the potty, celebrating each step back i.e. off the couch, pants off, etc.
Repeat this process over and over again. Keep the salt and the drinks flowing. It will help if you sing along and talk about the video and what a great kid that is in the video. If you have more than 1 VCR watch it in different rooms. If you can’t watch it any more talk about it or act it out. No other non-potty videos are allowed and no other TV shows or books are allowed. This is the only topic for the day.
By now you have certainly had plenty. Let your child know that’s not acceptable but don’t get too upset. Accidents are opportunities for “dry runs.”
First have your child change their own wet pants. Have him take the wet pants to the laundry room himself and praise that.
After dressing, demonstrate the route to the bathroom and the right thing to do from the location of the accident. If the accident happened in the kitchen, demonstrate how to get to the bathroom if you’re in the kitchen and you have to go. Throughout the day you should demonstrate the route from every part of the house–many times. Whenever an accident happens follow the same procedure.
After accidents go back to the video, the pretzels, the drinks, the dry pants inspections and the trips to the potty.
After 2 days we were 75-80% complete. The procedure finished gradually over the next 6 months but we never went back to diapers. Keep a close eye and continue to heap wild praises for successes and with dry pants inspections. Good Luck!
-Jeffrey and Arlene
My son David (16) is as normal as apple pie when it comes to NOTICING girls, he just doesn’t know what to do with them, which is just fine with me at this point. He has always been an affectionate guy, and even though he won’t make eye contact, he can flirt with the best of them. He also has a “caretaker” attitude toward some girls…But I have had to have talks with him about how much affection he can and cannot give at his age, that there are certain things that are not appropriate. I don’t know how much he comprehends and he needs an occasional reminder, but all in all is well behaved. It’s never too soon to start letting them know what’s appropriate and what isn’t.
I believe that Fragile X kids really struggle through puberty. They can’t express all the emotions they go through and they can’t understand the hormone overload. I believe that with all children it’s important to watch and really listen. Your children will become these creatures you won’t recognize and you surely won’t want to claim them as your own! Be prepared to have an endless supply of patience, hugs, and food readily available in your home. Be prepared to use professional help and don’t feel ashamed about using it. Understand that medications may need to be increased.
Jason is 34 years old and is fully affected Fragile X. He was not diagnosed until he was 19 years old when the gene was identified and testing became a little more common. Jason has lived in an apartment since he was 26 years old. This came after he graduated from the LESA Adult program in Howell, Michigan. Jason’s apartment rent is subsidized and he is able to live in a very nice one-bedroom apartment on his own. This is possible with daily support supplied by his mother and staff who prompt him to take his medications, take him once a week grocery shopping, once a month to the barber and whatever necessary doctor and dentist appointments.
Jason attends a daily program 3 days per week for 1/2 day. On Thursdays, he volunteers with the “Meals on Wheels” program, which he enjoys very much. This utilizes his positive personality traits of being compassionate, sociable and helpful.
About a group home situation…
A group of families purchased the home under a general trust agreement–I believe using government financing etc. They sold condo units (so to speak) in the house (duplex-males on one side, females on the other). The condo association oversees staffing, etc. Each family owns a unit for their child-actually I think the child may own it. This seemed to work well and if a resident did not work out for any reason—the condo unit could be sold to another family. Obviously there were parameters in the trust. It was the first option that struck me as very realistic both financially and with respect to my child’s future.
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