The list of characteristics – we are talking about symptoms and occurrences we and others find in daily life with Triple-x, things that sometimes take a lot of energy and creativity to tunnel or detour – is long. But don’t be afraid, not everything on the list here will occur to you! Most likely just some things will show up. The nature of Triple-X syndrome is a very broad, flexible, blurry, surprising, shape changing one. If a person has it, it does not automatically mean that it is predictable what will show up and when.
Some women have just a few mild symptoms, others have nothing in the early years, a bit sooner or later or sometimes also really significant ones late, others suffer from very severe outcomes. Or almost nothing at all. All is possible, nothing is a must-be and a will-be. The range and individuality is wide. This includes factors like IQ, growth, delays etc..
Scientists have not found any cure or straight therapy to eliminate the syndrome. But there is remedy, help and strategies in form of supporting therapies. The sooner the diagnosis takes place, the better are the chances to be well informed, prepared and understanding that Triple X is not a verdict and the women have great lives ahead of them. Full of many chances like other kids/people do have, too. We found, that the families who deal with it are often the best bearers of valuable advice and can help “new” families a lot to understand and relax and be patient.
So please, share your findings here, which means which symptoms you have found (and are sure or strongly suspect they do belong to Triple-X), what you have tried (we mean successfully or also fails) and what has helped you in the end. These can be strategies to learn and understand a thing, a treatment or medication (no self medication, please).
Here is a list of symptoms we have collected through own experience and talking to many Triple-X-Families all across the globe. In () you ill find inspiration by findings that worked for others. We want to amphasize that this is not a scientifically proved list! What workes for one might not be the rght thing for the next Trixy. But it provides hint how to approach an occurring symptom.
Body
- Trembling hands/tremor
(concentration exercises like drawing lines) - reduced body awareness
(sports, dancing, physio therapy) - low muscle tone
(physio therapy, sports) - restless legs syndrome
(weighted blanket) - kidney insufficiencies
(early screening and treatment) - coughing / lung insufficiencies
- growth
(possible hormone therapy) - reduced fertility
(early evaluation and treatment, explanation) - reduced body perception
(physio therapy, awareness training, animal supported therapy) - digestion problems, unspecific belly cramps, constipation
(dietary change) - stumbling, falling
(physio therapy, animal supported therapy) - touch sensitivity
- audio sensitivity
- speaks louder than average
- disorientation
(mobile phone, GPS tracker when travelling alone)
Mind
- meltdowns
(1-5 chart, breathing, meditation, take time out) - tunnel reception of outer world
- reduced memory
(repeating and diverse memory training) - depression
(therapy, support) - reduced patience
(meditation, focused breathing, taking time out) - overwhelm
(meditation, focused breathing)
Social
- distraction at school
(noise reducer headphones, small classes with up to 15 kids, school accompany) - low self esteem
(girls scouts, peer groups with ethical codex, trusting them to do things) - flexibility in truth/perception
- emotional self evaluation
(card system, 1-5 system) - emotional situation evaluation (in friendships, peers)
(charts, talks) - emotional perception of others
(chart facial expressions) - self harm (biting nails, scratching)
(replacement stimmings) - Pathological demand avoidance PDA
(https://en.wikipedia.org/wiki/Pathological_demand_avoidance) - seeking of negative attention
(emphasize positive behaviour) - reduced social interaction/ missing peers)
(private school, scouts) - learning difficulties
(internet based stúdying, audio books, tutorials, school supporter) - weakness in writing and arithmetic (Bannatyne reading system, Positive Behavior Supports for Home and School)