Help!! Niece with possible FAS?

Hi

I'm desperately after some advice. Basically my brother has a nearly 4 year old daughter who's mother binge drank regularly throughout her pregnancy when they were in a relationship together. My brother and her are separated now and have been for a couple of years. Ny niece stays with my brother every weekend so my parents and my husband see her all the time.

We have had concerns about her development for a couple of years with the hope that things would improve naturally in time. Sadly this is not the case. The mother is quite lazy in general with her children un everyday things like cutting their hair, bathing, cooking, washing clothes etc, but more importantly she doesn't take any responsibility for her actions while pregnant (she drank during all 3 pregnancies, 2 of her old children were from previous relationships.)

We are desperate to talk to a doctor or somebody who can helo advise us on what to do. My brother is a little scared of the mother so doesn't do anything to "rock the boat" or cause an argument which usually ends in her threatening to stop seeing his daughter. But, her inability to communicate and develop properly is hindering the rest of the families ability to bond with her. It's hardly ever talked about due to not wanting to upset my brother, but pretending that all is okay isn't working. Even my 18month old us starting to overtake her cousin on certain things.

As a family we feel we should be doing more to help, and if she could just be diagnosed she could get the support needed and we can learn how to help her and teach her.

The issues in her behaviour, are they normal for FAS or ARND or whatever she may have? Any advice would be so welcome as we are at a loss as to what to do next.

Unable to remember things for very long. Unable to grasp potty training. Puts whole pieces of food in her mouth that are far too big to chew instead if biting pieces off, ie a sandwhich halfs, cake. Forgets to use spoon and scoops things up with her fingers, yogurt etc... Squeels and gets very loud. Can't sit still for a second unless attention is grabbed by something on telly, then zones. Gets very shy around close family members for no reason. She hides in small spaces when shes upset. She struggles with simple instructions like "please shut the door". Also when she'stold off she often doesn't react to discipline and continues regardless. We also find with her words that she gets them wrong alot, like she will call me Mummy all the time, or call her Dad by his real name. Sometimes she will say the right things but in the wrong context, like, "Are you okay?" but she will say it to the wall. Its asif the words are there but she doesnt understand the context in which they are to be spoken and at the appropriate time? Its so hard to teach her things, like songs and actions because she forgets them.

Because these issues aren't being dealt with everyone is trying to interact with her the same way they interact with my 2 children, the eldest one being only 5 months older than my niece, and of course you automatically expect her to be as able minded as other children who aren't damaged maybe?

Can anyone please advise me on what I can do to help her? Are we literally powerless without the Mothers consent to get her any help? Does it sound like she has some form of FAS to you guys?

Thanks in advance x

3 Replies

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  • Hello,

    What a tricky situation to be in. First I think you need to separate two different problems:

    1) is your problems with your brother's ex and her standards of parenting and what guilt she might carry for how your niece is.

    2) is the problems your niece is experiencing.

    Your brother is right not to rock the boat, in all but the most extreme forms of abuse a child is better with their parent, and with both parents getting along amicably. So she may not be the sort of mother you'd wish to be, or wish on anyone, but she is your nieces' mother and so the best for your niece. Not creating agro between co-parents is a dangerous tightrope to walk, and essentially that's your brother's responsibility to sort out. It's not on your shoulders.

    To the FASD. No one here can diagnose a child they've not met, and I am not a diagnostician, however I am an SEN specialist and many of the behaviours you describe fit with an FASD diagnosis, which also seems plausible if your brother's ex drank through her pregnancy.

    Getting a diagnosis might be possible for your brother to do if he took the child to the GP and explained the situation, but of course that is going to be tricky.

    However you do not need a diagnosis to begin to work out how to support her. And when you understand the significance of an FASD diagnosis vs one for ADHD or a behavioural difficulty, this might give you a way in to talk to your brother about things. If you lay aside his ex in your conversations and just say "look, it's important we know so that we can best help your daughter, these are the differences, this is why it is significant" then maybe that will be easier for him to hear.

    The important thing to recognise with FASD is that it is a physical disability which has social symptoms. The physicality of the disability is in the brain, so it's not visible like other physical disabilities but it is a very real, very physical thing. Parts of the brain can be missing or under developed. Often these are the parts to do with cause and effect and understanding consequences - this alone would explain a lot of the example behaviours you gave for your niece.

    With a child with a behavioural difficulty, or ADHD or autism, you might seek to break down what they need in order to understand into smaller steps so that they can learn. In this way you can support them to modify their behaviour, understand emotion etc. But if the part of the brain that you need in order to understand these things is not there then no amount of small stepping will help. Being aware that your niece may be facing very serious physical difficulties in her development will help you to prevent something else she is hugely at risk of: developing low self esteem and just getting told off a lot unfairly.

    Imagine if she were a wheelchair user and people constantly berated her for not being able to walk, or tried to get her to do things that required her to walk. After a short while her main source of suffering would not be her inability to walk it would be how awful she felt about herself.

    If your little niece has a physical disability in her brain she needs so much protecting and defending in order to stop this from happening to her.

    You don't need a diagnosis to help her.

    But getting a diagnosis would help.

    Best wishes.

    Joanna

  • Dear Joanna

    I have to say you have described all of that in such a brilliant way. My children have FASD, and you are the first person I know who has described everything so perfectly. I am going to use your description (if you don't mind?), as though my daughters teachers understand that she has problems (and she does get a one to one), I really don't feel they have proper understanding of her (mainly because they don't have any training with FASD). Though I know about FASD I still find it hard to put it all into words (as quite frankly I'm not qualified as such, but have had to try my best to understand!!).

    Your quote of:-

    'You don't need diagnosis to help her.

    But getting a diagnosis would help her.'

    Is so true, and I have said this many times myself.

    Thank you

    Sunshineandrain

  • I'm glad you found my description helpful. The truth is we are all on the learning curve when it comes to FASD, the experts are saying we need to create the strategies, the pedagogy, it isn't a case of people not having had the training or not having learnt about it. The knowledge isn't there, or it is there but it's so tiny compared to what we know about other conditions. What you discover in supporting your daughter is important, when you find something that works or something that doesn't: share it! We all need to know. Best wishes going forwards.

    Jo Grace

    -The Sensory Projects

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