ENDpae - FASD BLOG

Parents in our group share their thoughts and experiences in living with FASD and the services and supports available to them.

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The prospect of my child ‘ageing out’ of CAHMS and needing to rely on adult psych services is scary.

Being parent to a child with FASD can be a very lonely experience.

Our child only presented with really difficult behavioural problems when puberty started.

Our children need huge advocacy. It sometimes feels overwhelming, alongside the intensive parenting they need.
I’ve found it useful to set six-monthly timeframes with hoped-for goals. It’s surprising, and gratifying, looking back, to see how many of these have been achieved.
Basic stuff but it works for us!

Trying to get services is a joke and difficult behaviours get more intense as the child gets older.

There is light at the end of the tunnel! Our daughter is now 29 and is managing so much of her life better than we might have imagined when she was younger. In her first annual performance review at work, she ended the interview by standing up and saying to her boss, “are we done here yet, I’m 20 minutes late for my shift’. In time things do improve

The psychiatrist at CAMHS really seemed to understand FASD. He reviewed her medications, adjusted them for how she has grown and added another tablet. Her behaviour has stabilised a good bit and, thankfully, she is eating much better.

What I have christened ‘Fugitive Memory’ is difficult. We can spend ages discussing some course of action and coming to an agreement, only the next day to find it has disappeared from her consciousness. Of course, it it may reappear days or even weeks later, usually prefaced by her saying “I’ve always…”

When she gaily talks about having ‘a few cans’ with her friends, and I point out the ‘toxic’ in inTOXICated, knowing how her brain has been programmed for addiction.

I’ve found many things to appreciate about raising our child with FASD.
She is very lovable and now she is growing up she craves a love ‘just for her’
She is very protective of friends and family and always supports the underdog
She is confident and happy most of the time
I try to look for the positive in things, remembering that I’ve done my best
I’m often astonished at how far she and we have come

The parenting can be really hard:
Feeling like I’m in an abusive relationship, often walking on eggshells
Wondering will it ever get better, feeling helplessness
Worried about the effect on other children in the family
Wondering will she come home tonight?
Fearful of pregnancy due to her vulnerability

I have to acknowledge the role played by a Social Worker from CAMHS and by a Youth Worker from Foroige in the team we have built around our child. That she is (mostly) doing so well, physically and mentally and is looking forward to engaging with the Leaving Cert Applied programme is in no small part down to these two amazing women. That we, as parents, have had them as a sounding board, as interpreters of confusing behaviours and as sources of re-assurance, has been vital

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