The Funny And Sweet Child

[chiefmummabear]

Hi, I’m rather new to all this and tend to lurk and watch, rather than post. This seems to be a really lovely community though, with lots of combined wisdom!

Background - I have five children, youngest two having been adopted.

My eldest adopted DD is 8 and we knew when we adopted her that she was on the FASD spectrum, so went in with eyes wide open, I suppose. She is absolutely great and we feel very bonded with her, but she has many issues that mean parenting her is far from easy st times. She exhibits many of the issues that you would associate with FASD - tactile sensory problems, short concentration span, emotional volatility, struggling with school work (especially maths) and so on. On top of this she has severe hearing loss and wears hearing aids. She is a very happy lively child and copes well at school on the most part, but at home can have huge mood swings.

I have two questions really - does anyone have experience of parenting an older child/teenager on the FASD spectrum and is it a minefield?! I already know that it probably is, but just hoping there may be some positive stories! I try not to, but can’t help thinking ahead to when she is a teenager (I know!) and wondering how we are going to cope.

Also, I’d heard and read that it is good for children to be able to “own” the diagnosis from an early age, but although she is aware of the drinking and ‘bad drugs’ that BM took, I have never really gone into how this affects her or given her any kind of a label. I guess I’m scared of her using it as an excuse or as a way to limit herself. Has anyone else had experience of explaining FASD to an affected child and if so, how old was your child?

My son doesnt have FASD, but he does have ASD and a learning difficulty. He was nearly 8 when he came to me and no work had been done with him around his diagnosis.

When he was 9 he cottoned on to the fact that he attended special school and that there was something called mainstream. We started talking about how people are different and sometimes you need help. I used the example of wearing glasses, which we both do. Glasses don"t change who we are, but they help us to see and that helps us in life.

I had a number of thwarted attempts to come out with the 'A' word and finally managed it in the summer holidays before he started secondary school.
He is 14 now, I wouldn't say that he owns the diagnosis, he accepts it, sometimes he does use it as an excuse, or blames it when things arent going the way he wants. Academically he is a below average, but otherwise I don't think he really lets it limit him. We talk a lot about the things he can do because of his 'autism brain' - he has an amazing visual memory, he can retain loads of really use (less!) stats about football, FI or whatever he is interested in. We did talk about it a lot in lifestory therapy. I have a group of mum friends who all have children with ASD and or ADHD, they are all around the same age and we socialise with and without the kids. Its good for them to know they arent the alone.
I don't think 8 is necessarily too young to start talking to her about it. You don't have to sit her down and just tell her, but you can start the conversations and return to it as she matures and her understanding develops.
Also try to to think of it as a label, its not, its a diagnosis. She is not FASD, she is a person who has FASD, but thats not all there is to her.

Thanks for the reply Ted. Your son sounds lovely and you are both lucky to have found one another. Is he your only child?

You’re right, it should be viewed as a diagnosis and not a label and that is certainly how I see it. I guess I’m worried about how she will view herself as she gets older - I wouldn’t want her to see herself as a victim, as although she is tiny, she has so much fighting spirit! I suppose as you suggested, the ‘drip drip’ gradual approach is best, so I’ll keep looking at her life story book with her and deal with issues/questions if and when they arise.

As an aside, I have been really amazed how ill-informed schools are in relation to FASD though. Although her school is trying to be supportive, her teacher had never even heard of it. We are in the process of securing an EHCP for her now, as I imagine transition to high school will be a tricky time for her.

yes he is a bit of a charmer. He has done very well and I'm very proud of him.

At the moment is just me , him and the cat, though this may change in the next few months

Lovely- maybe exciting times ahead for you then

probably more challenging than exciting, but sometimes you just have to jump in!