This Is My Child: being the parent of a child with special needs

"This is my child, and he is perfect." Mumsnetter mymatemax

 

"I'd like people to understand what really happens when your child is different:

  • That it takes years for professionals to agree that there really is a problem for some people, and that these are not mild cases but children years behind their friends.
  • That this happens even if you take your child repeatedly to whoever you can think of.
  • That the 'help' consists of units you can't get into, photocopies of how to parent/make picture cards, and yet more assessment.
  • That I received more information on what to do in CenterParcs for a weekend break than I have from the NHS for my children.
  • That there are no schools for some children.
  • That you can be sent home from hospital with a child who could have a life-threatening seizure and must be watched 24/7, and since the NHS no longer fund monitors you will be referred on to a charity WITH A NINE-MONTH WAITING LIST to get funding. Because 'parents stay awake 24/7' for nine months is the plan.
  • I want people to know that I AM brave, and patient, and I love my children, but I am also exhausted and lonely and bemused at the twilight world I have entered.
  • I want them to know that there are people that are really awful. Who don't think we should be near them. And a few glorious individuals who make your heart soar.
  • I'd like how we treat our most vulnerable to be a source of national pride, because at the moment we should be very ashamed.

"And 8 years ago before I had my beautiful boy I hadn't a clue. I assumed that we treated people with disabilities with kindness and compassion. I imagined we were rather exemplary and that everything was catered for. I was wrong." Zzzzz

"There are very few events that are safe to take children with autism to, as they often disturb others or attract looks and comments. I have two children with ASD, and though I would love to take them to a panto, it is just too stressful. Ditto most cafes, cinemas, sometimes parks and really anything else that most parents enjoys sharing with their children. Pretty much the only thing I can do is swimming and walks in the wilderness!" Cansu

"We take our daughter to all sorts of shows and performances. Sometimes we have had to remove her; mostly she is 'containable' (for want of a better word) but always with either my husband or me sacrificing a lot of our enjoyment to ensure that she is OK, understands everything, and is reminded about her behaviour. That’s just how it is for us." Silverfrog

"Children with special needs will soon become adults with special needs. They don't stop needing support, or deserving respect and empathy, just because they're not cute little kiddiewinks any more." Kungfupanda

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Last updated: over 1 year ago