3rd May, 2008

Waiting Eleven Years for a Diagnosis – Part II

In my last post I talked about our difficulties in getting a diagnosis for Seth.

In Australia there is no real recognition of Fetal Alcohol Spectrum Disorders (FASD). We have no diagnostic teams who understand the problem. We have to flounder around, making appointments here and there for hearing tests, sight tests, blood tests, genetics consultations, IQ tests… and at the end of it all, months after starting, we were no closer to understanding the big picture.

Until a lucky break.

An organisation in my home city, ARBIAS, who deal with adults suffering brain injury from the effects of drug and alcohol use, realised that children suffered this problem too and launched the first Australian clinic to look at FASD. No team approach, just one neuropsych assessment, but I had my referral in within days of finding out about the clinic, and Seth was booked in for mid December. I was ecstatic, not just for us but for all those other foster families I knew who suspected their kids were alcohol effected.

Seth was reluctant to submit to yet another assessment, but I explained to him that this time we would be looking at his brain and how it works, and even how it doesn’t always work properly, and that with this information we’d be better able to know the best ways for him to learn. At this point in time, having given up on the home schooling, he had been attending a small private community school half an hour from our home with small classes (only ten in his class) and individual work programs, and he seemed quite settled and happy. He had just the day before completed grade five, and after the long summer break, would enter his final year of primary school.

It was a long day for Seth, who is easily fatigued by cognitive activities, but my discussion with the neoropsychologist at the end of the day left me optimistic that this time Seth’s real problem (brain damage from fetal alcohol) was being acknowledged and the final report would be a major stepping stone to acquiring the services he would need to be educated to the best of his ability over the forthcoming years.

I was maybe a bit too optimistic, but a month later I finally did get that report, and as I mentioned, it did tell me what I’ve been waiting to know. What is more the detailed results of all the testing gave us an accurate profile of Seth’s cognitive abilities, including attention and memory, executive and adaptive functioning, auditory and visual reasoning, language comprehension, reading and maths levels. I was confident as I read the report (although it occasionally brought tears to my eyes as I realised the extent of damage my little boy’s brain had suffered) that it would be of great assistance to his teacher in the school year ahead.

What was a disappointment was the news that the organisation, after barely six months, was closing the FASD clinic. Apparently they’d overreached themselves, and could not actually afford to provide these services to children. Although we were one of the lucky families to receive a diagnosis, it meant there were no further services offered, as had previously been promised. We were on our own again.

So here we are with a seven page assessment outlining Seth’s neuropsychological abilities and impairments.  I need to work harder at being an advocate for Seth, but I’m not sure how to go about it. I feel too emotional and passionate sometimes to present as cool and logical. I need someone else to be able to come to the school and talk on Seth’s behalf about his disability. Unable to find anyone knowledgeable about FASD except the neoropsychologist who did the original assessment and with whom I sometimes have phone and email contact, I am ringing around organisations that provide services for children with acquired brain injuries and I’m hopeful they may have some services to offer Seth. I have also contacted an educational psychologist who seems sympathetic to Seth’s needs and claims some understanding of FAS, and she is willing to come work with the school (but that will be at quite some cost to us).

I can’t be the first Aussie mum to have a child with a FASD but I feel like it. I know of no other child with a diagnosis (but have my suspicions of a few children in foster care who show quite definite symptoms). I’m hoping someone might read my blog (or a few someones) and maybe one day I can get a support group going. The only support organisation I’m aware of in Australia is NOFASARD. That’s in another state (South Australia), but at least they provide some information, and are a lobby group for families living with FASD in Australia. Anyone else in this country who suspects their child has fetal alcohol damage would find this a good starting point for information.

For now I need to look at my son and determine his immediate needs and how we can meet them.

Of course, it’s not all about FASD, but when it comes to his school experience somehow it always comes back to concerns about his behaviours and learning difficulties. At home it’s easier just to see the sweet and active boy he is. He loves riding his bike, learning tricks on his skateboard and mastering his inline skates (actually his big sister’s but I’m hoping she’s actually passed them on to him). He is delightful with his little foster brother (who he’ll so miss when he has to leave our family) and is totally obsessed with the computer game RuneScape which he loves to play on line with Portia and their friends. He is an interesting conversationalist, often branching off on some illogical but fascinating tangents, and makes for good company when he has to stay home from school (which happens quite regularly) and we’re forced to spend the day together.

People tell us how lucky it was for him to be placed in our family all those years ago, but despite the hard work and heart ache, he’s a joy and we’re the lucky ones.


You might find the FASLink listserve of help: http://www.faslink.org/faslink.htm It’s mainly US and Canada folks, I believe, but I”m sure they’d give you support as well! (My SIL, adopted from foster care, has FAS. We expect to be her guardians some day, so I am tuned into a lot of FAS issues and resources.)

You might also be interested in the blog http://thoughtspreserved.blogspot.com/ it’s a Mom of two kids with FAS who also works with an FAS organization. Her posts vary from being about her kids and their actions (as well as her other kids) and broader issues of FAS.

Thanks AnnMarie,
I must admit that pretty much all my support comes from the internet, and Kari’s blog I’ve found particularly helpful, along with a few others by mums with children affected by FASD (must link them on my blog sometime).

Thanks for calling by, Janine

A wish from the heart, a whole lotta love and hugz
HAPPY Mother’s Day !

Belated Happy Mothers day, and also a super warm thank-you during National Volunteers week for all your invaluable contributions over the years.
-Jess NT

Are you still around? its been 2 years since you wrote this.
I have a Fosterson, 4yrs old, we are certain he is FAS but like you we bang our head on a wall trying to get anyone to be interested. We are not alone, every teacher, therapist etc who sees him, comments “is he FAS?” They spot it.

Would love to hear from you and see how far you’ve come.

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