FASD – an adoption reality

FASD – What is it? 

FASD is an umbrella term that covers Foetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Alcohol-Related Birth Defects (ARBD), Foetal Alcohol Effects (FAE) and partial Foetal Alcohol Syndrome (pFAS). Its effects range from reduced intellectual ability and Attention Deficit Disorder to heart problems.

http://www.nofas-uk.org

FASD is 100 per cent preventable by not consuming alcohol in pregnancy. Nobody knows the true prevalence of FASD. It is thought that in the UK the majority of children with FASD are adopted or fostered.

Some of the issues for people with FASD include difficulties processing information,  predicting events, and understanding consequences. They have attention and memory defects. Issues with problem solving skills result in a struggle with abstract concepts – time, maths, money. Social skills, immature behaviour, and poor impulse control are a feature. Sensory issues play a part. Hyperactivity may be apparent.

What life is like in our family

Bubble is 9.  She was placed with us at 5, with her sister, Squeak, who was then 3.  This year Bubble was diagnosed with Alcohol Related Neurodevelopmental Disorder (ARND). Our  reality is far from what we thought family life would be. Some days every single interaction seems tinged with ARND.  Like all adoptive parents we’re helping our children deal with developmental trauma and loss.  Bubble has disorganised attachment. The ARND is the icing on the cake, and in the cake, and dripping down the sides of the fricking cake. Forget soggy bottoms being the problem, the whole cake is a gloopy amorphous hodge podge of trauma.

In order to help Bubble we have had to make massive changes in the way we live our lives. We have to be consistent, patient, repetitive, have routines. Oh boy, do we have routines! If we deviate from the routines we know it’s not going to be A Good Day.  We have adjusted our expectations, and every day we have to really focus on building  positives and connections, because the ones we built yesterday have been forgotten by Bubble.

Bubble may understand things one day but may not know them the next. When her anxieties are heightened this may be minute to minute. School is a confusing nightmare for her. Some days Bubble comes out of school super-charged with anxiety. She lies to us about whether she has had a spelling test, she attempts to leave her reading book at school, she does not want us to know anything about what is happening at school. And she can have trauma rages at the mere mention of homework.

Bubble is unpredictable, and can be angry and aggressive, with Squeak, her younger sister, often the target. We have also been kicked, slapped, and had things thrown at us.  Bubble does not understand consequences. Telling her that she may hurt Squeak if she pushes her out of the way to get out of the front door first every morning,  is just not computed.

Bubble has sensory issues.  Some days she is a whirlwind, and can become very easily disregulated. She gets distracted easily.  She struggles with some food textures. She can trip over fresh air.

Bubble loses things and forgets things. Some days she cannot remember that she needs to brush her teeth, or wash her face. We have had mornings where she does not appear to recognise us.

Bubble has very low self esteem – her pot of shame is easily topped up and often appears to be overflowing. As Bubble grows, the differences with her peers becomes more marked. Her social behaviours are way below her chronological age. She does not want friends over, and is rarely invited to friends’ houses or parties.

We constantly try to find things Bubble enjoys doing.  So far the short list includes sorting and resorting fossils into particular patterns, tennis without the competitive element, and horse riding. We attempt to big up Bubble in these activities.  We try to have conversations with her about them after the event, to spark further moments of connection through her enjoyment of them. Sometimes she seems to have forgotten them as soon as they are over.

Obviously in all of this we also have to be very aware of Squeak’s needs.  Whilst encouraging their sibling relationship, we know that Squeak can be perturbed by Bubble’s presentation.  Bubble is becoming increasingly jealous of Squeak. We ensure that they both have 1:1 time, and particularly at weekends they both have the opportunity for this with @ProseccoSue or me. This seems to help both girls, but it’s a far cry from my previously imagined version of happy family life.

What may the difficulties be later on?

Adults with FASD have difficulty maintaining successful independence. They have trouble staying in school, keeping jobs or sustaining healthy relationships. Less than 10% of adults with FASD live independently due to impairments in life and social skills, despite having low average or average intellectual abilities.

http://www.nofas-uk.org

In Bubble’s teenage years we will need to talk with her about ‘interdependence’ rather than ‘independence’. We know that when Bubble leaves home she will probably continue to need support with time management, budgeting, organising, shopping and cooking, personal hygiene, social relationships, housing, and finding and maintaining employment.  Unless there is a major shift in services’ understanding of FASD, I am extremely sceptical that Bubble will receive any formal support when she is an adult.

Services need to focus on prevention, diagnosis, and support

It is important for the family and the individual to get a diagnosis because research has shown that without a diagnosis the secondary outcomes are very poor: 90% of patients with FASD will develop mental health problems, get into trouble with the law, have sexual difficulties or go on to have their own alcohol and drug problems. If FASD goes unrecognised at an early stage, there is a high risk of these adverse life outcomes.

http://www.nofas-uk.org

When Bubble came to us, despite social services knowing her birth mother’s history of alcohol consumption, and despite Bubble’s presentation, there was no dialogue about the possibility of FASD.  We asked for help. Repeatedly. But nobody seemed to understand our struggles. On one memorable occasion we listed Bubble’s behaviours to a social work manager. His verdict was that these were ‘typical’ behaviours and that we appeared ‘anxious’!

When a Consultant Geneticist finally made the ARND diagnosis earlier this year,  we were told there was no point referring Bubble to the Paediatrician, as in our area they had been refusing such referrals.

At a school meeting, not one of the health, social work or teaching professionals sitting around the table knew what ARND was. Most had heard of FASD, but didn’t appear to understand the implications of such a diagnosis.   At a subsequent school meeting as we explained Bubble’s issues, her new teacher asked us ‘why are you telling me this?’

Alongside clear messages to all expectant parents that there is no safe level of alcohol consumption during pregnancy, this is what children with FASD and their families need from health, social work and education professionals:

  • An early diagnosis.
  • Comprehensive assessments from knowledgeable social workers.
  • Honest discussions with potential adopters about the possibility of an FASD diagnosis, and what it may mean.
  • Personalised support in schools, and a willingness to embrace other teaching styles.
  • When working with adopted teens, a recognition that the ‘immaturity’ they appear to be displaying,  may actually indicate undiagnosed FASD.
  • Active and non-judgemental listening to parents, whatever the age of their child.

A final word from ‘Understanding FASD’, Maria Catterick & Liam Curran, 2014:

‘It is time to make everything less of a battle and more about equity in terms of rights to public health services so that more children will be protected from alcohol exposure in the womb, and those that are prenatally exposed will be able to achieve the goals that much of society take for granted. ‘

 

We laughed. We cried. We survived. 

National Adoption Week is nearly upon us again.  Tempting as it is to assume Head in Sand position, I am trying to change my narrative, so I’ve decided to embrace it. Well, not exactly embrace, more tolerate it, try to make the best of it. The old Blitz mentality.  By the end of the week I may have resorted to gathering up my pinny, doing a little jig, and waving my fist around wildly, whilst screaming ‘Do your worst, you haven’t got me yet!’

My problem with NAW is that the focus is on recruiting potential adopters, without much in the way of discussion about the reality of parenting a traumatised child. I don’t want to rain on any parades. I’m gay, ergo I love a good parade. It’s in the Gay Rule Book: thou shalt love a good parade.  What I would like though, is for NAW to reflect the reality of being adopted and being an adopter, rather than some honey coated version of ‘lucky’ children and ‘amazing’ adopters.

So here’s our family’s reality over the last year:

Bubble was diagnosed with ARND, Alcohol Related Neurodevelopmental Disorder.  Aha! I hear you cry. Bet that diagnosis had the professionals flocking to offer support! Err, well, no actually. Nothing. Nada. Diddly squat. Zip.  The Consultant Geneticist told us there was ‘no point’ referring Bubble to the Paediatrician. Oh hang on! I’ve just remembered. There was an offer of support: school wondered if she needed a hearing test.  I found myself having one of those Twilight Zone Floating Above Your Body As You’re Saying It Because It’s So Ludicrous That You Should Have To Say It experiences, explaining to a teacher, SENCO, social worker, and educational psychologist, that it is Bubble’s memory and executive functioning that are damaged rather than her ears. We’ve been left to work out for ourselves what this diagnosis means, how best to support Bubble, and to once again plead with the school to embrace her differences and needs.

Having been advised Bubble would not get an EHCP,  we’re currently completing the forms ourselves.  We don’t think we will be successful, but we have to do everything we can to attempt to get the right support for Bubble.  We’re hoping that at least with it all written down it will focus the school a little more on the support she needs to reduce her anxieties.

We attempted to have a dialogue about Bubble’s transition to a secondary school setting. We asked for a therapeutic educational environment, but were advised by a social worker that in order to possibly come anywhere near achieving this Bubble would have to ‘fail and be excluded’ from a local secondary school. (Insert your own swear words here.  I’ll stick with my new favourite phrase, courtesy of @NowWeAreSix, ‘say WHAT now?’) We were then advised to ‘go private’.

We visited a semi-local secondary school, and were delighted to discover the SENCO actually Gets It.  The school is fairly small, all the staff have been trained in Attachment Awareness, and the SENCO has agreed to come to our next meeting at Bubble’s junior school.  Cue virtual kissing of said SENCO. I am still wondering whether I actually dreamed this meeting.  I don’t think I did, as the SENCO was wearing what can only be described as stripy Cuban heels, and I cannot imagine that my subconscious would tolerate such a fashion faux pas within an educational setting that is not the New York School of Performing Arts.

We finally started Dyadic Developmental Psychotherapy. We have a fabulous psychologist and are now obviously in a wonderful state of co-constructing narratives with Bubble, who would much rather be eating or watching television. We take our co-constructing chances where we can.  We will get there.  This will help. We have decided this.

Squeak moved up to junior school, and twice endured being referred to by her birth surname.  The first time was in front of her entire year group on the taster day. Cue apologies and assurances from the Head that it would never happen again, staff understood how upsetting this was etc and so forth. The second time occurred on Squeak’s first day at junior school. This time her old surname was plastered over books, coat peg and drinks bottle.

Squeak is now bed wetting most nights.  Sometimes twice a night.  Her anxieties are ramped up. Her controlling behaviour is totally over the top. At least we don’t need to wonder what prompted this. We’ve asked for an assessment for life story work.

My employers decided that after 2 years flexible working I had to work full time. No negotiation. According to my then line manager I ‘knew what I was taking on’ when I adopted. Caring for 2 developmentally traumatised children doesn’t really fit with being a full time social worker in a local authority, so I forked out for a lawyer, won my case, and left.

We worried all summer about the possibility of one of Bubble and Squeak’s siblings returning to care. Thankfully it did not happen. They’re all still clinging on. Theirs is another adoption reality story.

My adopted niece continues to run away from the local authority care to which she had returned. Currently she is hiding out at a ‘boyfriend’s’ house and refusing to return to the care home.  There’s more adoption reality for you.

My partner and I set up a local adoption group.  To be fair the local authority had made an attempt to do this a few years ago, but there was very poor attendance at their initial planning meeting so they immediately gave up.  Oh well!  They had tried, hadn’t they?  The ‘we tried, honestly we did’ box had been ticked for the inspectors.  We now have a thriving, supportive, friendly group of adopters who share knowledge and experience, and help each other to do the best they possibly can for their families. How did we do this? We networked. We used our charm and ready wit. We made it appealing. We chose a comfortable friendly venue. We offered sandwiches.

We got a lot out of @TheOpenNest’s brilliant conference in July. We met some lovely people. We also had good feedback about some badges we sold for the charity, so I opened up the Thelmatopia shop on e-bay.

Last, but not least, we found a babysitter. And I think this one will stay, despite Squeak’s best efforts. Huzzah! Selfcare hash tags all round.

And there, gentle readers, we have it.  Our own adoption reality highlights of the last year. We’ve laughed, we’ve cried, we’ve survived.  Just. So, with a Gypsy Rose Lee flourish, I bid you adieu, and urge you in the forthcoming National Adoption Week  to embrace the Adoption Reality Sharing Experience.*

*The very lovely and wise @ProseccoSue advises not to shorten Adoption Reality Sharing Experience as a hash tag on twitter.

 

 

 

Changing the narrative 

Every fortnight we have a DDP (Dyadic Developmental Psychotherapy) session with 9 year old Bubble. In between the sessions we speak with our fabulous Psychologist. 

This week she said something which was so obvious and true, but it was the Thing I had Not Wanted to Hear. 

Our lovely Psychologist thinks we need to change our narrative. Her observations lead her to believe that Bubble does have an attachment of sorts to us. At times it is avoidant, at times it is ambivalent, but disorganised as it is, it is still an attachment. I was naively hoping that DDP would help the attachment become secure. So here’s the Biggie: it probably never will be a secure attachment. And in order for us to move on, we need to accept this. 

Here’s my recent thinking: 

If Bubble isn’t securely attached by the time she hits secondary school, we are in for Big Trouble. 

But what has this thinking done to me? And to our family? Well, I feel anxious each time we have an Incident. I also occasionally feel resentful. I know! Ridiculous, isn’t it? During an Incident my thinking goes something like this: 

Oh Christ  here we go again don’t panic, don’t PANIC! Think PLACE! What would Dan do? What the effing thingummyjig WOULD Dan do? Oh! That seemed to work/didn’t work/let’s try something else. FFS! Just because we set one teensy weensy little boundary this happens. I am exhausted and bored. And it’s been 4 years. FOUR years! Why does she not yet trust us? 

So it’s time to change the narrative. Time to practice acceptance. Time to Embrace the Quirky. Time to appreciate a little bit more what we have. Maybe live more in the moment, than worry about the future. 

How to achieve this enlightened state? No idea really!  I will start by practicing mindfulness a bit more, and go for long walks. I’ll try not to ruminate. 

It’ll be a work in progress. Now, repeat after me: I Will Embrace the Quirky.