Children with Health Problems and Special Needs

“I don’t think anyone expects their child to be born with health complications. It certainly isn’t easy when you are already dealing with your own long-term illness.  But having CF has taught me that life has its difficulties, you just have to deal with them as best you can. I’m just so glad I’m his Mummy, I wouldn’t change him for the world.”

Emma, CF Mother

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Being a parent with CF can be tough even if your child is healthy and has no additional needs. However several of our members have children who have their own health problems or special needs, and this can add an extra dimension to the challenges that we face as CF mothers.

Other than the possibility of inheriting Cystic Fibrosis (if the father is also a CF carrier) and issues linked to premature birth (an increased risk in women with CF), there is currently no research to suggest that the genetic children of CF mothers have an increased likelihood of genetic or congenital abnormalities.

The difficulties that some of our children are dealing with include:247292_10150215361046661_1804532_n

– Cystic Fibrosis (regular and atypical)

– Autistic Spectrum Disorders

– Sensory Processing Disorder

–  Hypermobility Syndrome/ Ehlers Danlos Syndrome

– Cerebral Palsy

– Reflux and Gastro-Oesophageal Syndrome

– Food allergies

– Epilepsy

– Lennox Gastaut Syndrome

– Hearing Loss

In some ways a CF mother may be more prepared for dealing with health problems or special needs in her child. After a lifetime of managing our own health conditions we may be more familiar with the concept of additional difficulties in life, dealing with specialists and the hospital environment that many others are. However, in other ways we may struggle more as we are already managing one full-time medical condition (our own!) and may have lower levels of stamina and ability to deal with a double burden of extra needs in one family.

In this section you can read about the experiences of other CF mothers who have children with additional needs, the challenges they face and the coping strategies they use. Most importantly perhaps, you can read about just how special their beautiful children are too!

For those who have children with additional medical needs or learning difficulties, please know that you are not alone. Our private Facebook support group is great ways to ‘meet’ with others in similar situations and to find support, encouragement and friendship.

UPDATE: We now have a specialist Facebook support group for mothers who have CF and who also have a child with additional needs. Please contact Emma Harris on the following link:  https://www.facebook.com/emma.harris.16

 

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