Support for parents and children with chromosome abnormalities

A chromosome is a carrier of genetic information. Chromosomal abnormalities are genetic conditions that occur due to a problem with one of the 23 pairs of chromosomes. A chromosomal abnormality can affect the number of chromosomes, the structure of certain chromosomes or the composition of chromosomes.

There are several different genetic syndromes caused by missing or extra chromosomes, including Trisomy 21 or Downs Syndrome, Turner syndrome, Trisomy 18 and Trisomy 13

It is quite common for children with chromosome anomalies to either have birth defects or be at increased risk for future medical issues, including developmental delays.

At The Parent Infant Clinic we work with families with children with chromosome abnormalities to help provide the best possible outcome for their children and ensure that they are put on the best path to develop their skills and capabilities to their maximum potential.

Whilst we recognise that working with the child is of major importance in their growth and development, we also acknowledge the importance of supporting the parents on this journey. In fact we class supporting the parent of equal importance to that of working with the development of their child as if the parent doesn’t take care of themselves, they can’t take proper care of their child.

We often hear, from parents of children with chromosome abnormalities, that self-care is too expensive, too exhausting, and too time consuming. We hear that the needs of their child is so great that they feel that time spent caring for themselves is time stolen from their children.

We work by supporting parents through this process and offer hope.

There are many free and quick ways to practice self-care, even during the COVID-19 crisis. On the hardest of days, when you are at your most exhausted, when you feel selfish taking care of yourself, you no longer need to justify making time for yourself. There are lots of ways to practice caregiver self-care. Try one or two strategies a day and see what works for you. Any small steps you can take toward caring for yourself makes a world of difference. Here are some strategies we can recommend whilst at home in isolation:

  • Soak in the bath
  • Listen to music
  • Sunbathe safely
  • Socially connect with family and friends via telephone or online via Skype, Facetime, Zoom for example
  • Card games or board games
  • Crossword
  • Yoga
  • Arts and crafts
  • Read a book/ flick through a magazine
  • Dance
  • Sing
  • Jigsaw puzzles
  • Listen to audiobooks
  • Listen to podcasts
  • Watch old home movies
  • Have a movie marathon
  • Write a letter to an old friend
  • Make a time capsule
  • Pamper yourself – put on nail varnish or body creams
  • Plan a real (or fake) future holiday
  • Cook or bake
  • Drink more water 

In addition we recommend practicing the following self-care mindfulness strategies to promote positive well-being:

  • Think about good past memories
  • Really taste your food 
  • Spend time outdoors - take mindful walks
  • Do the dishes mindfully
  • Wear comfortable clothing
  • Paint or colour
  • Give self-affirmations
  • Daydream
  • Write in your journal
  • Gaze at the stars
  • Stretch
  • Practice mindful breathing
  • Practice progressive muscle relaxation
  • Try out creative visualisation

At The Parent Infant Centre we recognise the importance of offering emotional support during this time of isolation.  We offer online consultations and psychotherapy services for both children and families. To book a consultation or to discuss online therapy, please get in touch.