Tag Archives: FASD

Guessing the future and planning for the unknown

Have you got any advice for today’s anonymous poster?

I am currently embroiled in the process of adopting a very young child that I am fostering, through a non-agency (or as my LA like to call it ‘private’!) adoption. This has involved wrangling with my LA over what, if any, post-adoption support might be on offer, and they have asked me to come up with my own assessment of what I think the child’s future support needs might be, just in case they decide to offer PAS after all.

ProblemThe issue of whether PAS will be offered or not is slightly separate to this request for advice, as I have taken legal advice on that and am fully armed for battle! My question really is whether anybody who is further down the line as an adoptive family might have any suggestions as to what I should ask for in terms of PAS. Without sharing too much of this little one’s story, she is currently very young, and is meeting most, but not all, of her milestones. There is a definite possibility of a future diagnosis of FASD. She has a number of other chronic but fairly common health issues that are not directly related to her early life experiences but are most likely inherited. She has lived with me since she was a few days old.

I adopted my son nearly three years ago, also from foster care, but via a more traditional route. I have looked at his PAS plan for inspiration but it really is a very vague, two sentence affair. I do realise that there is a world of difference between making a plan, and then actually getting that plan put into action at some future date, but if possible, I would really like to cover as many bases as I can at this early stage. Can anybody suggest the types of things I ought to be asking for? Thanks in advance.

Waiting for help

We really value all of the guest posts we’ve had this week – all talking about a difficult subject, but one that needs bringing to the fore. This post is no exception…

I am writing this anonymously, not because I am ashamed but because I don’t want my daughter coming across this and identifying herself in years to come.  I also find it difficult to be open as I don’t want it to colour peoples views of my amazing, sparky little girl.  My apologies in advance if it is a bit disjointed…it was quite emotional to write.

My daughter is young – 6 years old and has been with us 4 years.  She is funny, clever, energetic, chatty, caring, beautiful, amazing….I could go on but you get the picture.  She is also very angry punchingand lashes out at my husband and I when she loses it.  This can take the form of kicking, punching, pinching and biting.  She knows it is wrong and she feels shame afterwards.   She wants help – we have been waiting over 7 months for help from our local post adoption support.  We are on a waiting list for sensory therapy with no indication of when this may happen.  I am hoping it is the right thing to help her.  I am on a waiting list for counselling – again with no indication of when this may happen.  My requests to date to be assessed to apply to ASF have been denied.  I am currently considering making this request again and more officially/forcefully but want to be more knowledgeable about the therapies available and what may be beneficial to strengthen my argument.  If anyone has any suggestions/advice as to alternative support therapy that may help then please let me know via Adoption Social.

I have tried what I can to help her.  A lot of it is instinctive.  We use some simple theraplay techniques.  We use meditation CDs particularly at night. We try to incorporate regulating activities and often do life story work with her. I have explained to her in simple terms why I think she has anger problems.  She gets it – and can now tell me when she gets “that feeling”.  But sometimes it comes on so quickly – like a light switch.  Last night I just hugged her whilst she was beside herself because she had “that feeling”.  I wanted to sob along with her.  My beautiful girl in so much pain.  We can only do so much – she (we) need professional help and soon before it escalates and becomes harder to address.  The longer it is left the harder it will be to address and potentially the more it will cost.  Simple economics should dictate that it is dealt with quickly, without even taking into account the cost implications if she enters adulthood without the support provided in a timely fashion.  I know we can’t make her past disappear but I do believe firmly that she can be given the support and tools to be able to cope and lead an independent and valuable life.

We are lucky – she is young so we can control the violence but I am filled with fear as to what will happen if we can’t bring it under control.  I am angry that the required support is so difficult to access.  I strongly suspect that the behaviour is related to the violence she experienced in utero and also the drug and alcohol she was exposed to.  She has been assessed as having regulation and sensory issues.  I am also looking to get her assessed for FASD…but one battle at a time.  It breaks my heart to see her hurting so much and to not be able to fix it for her.  She (and all other adopted children) deserve to be given the appropriate support/therapy when they need it.  It is inhumane to make them suffer longer.  They didn’t chose this life and if we want to truly break the cycle then the support needs to be there.

Sorry – I have gone off on a bit of a rant 😉 The prevalence of the violence varies depending on how stressed/unsettled she is.  It is often focussed around bedtime – she doesn’t like going to bed.  Why we don’t know but I suspect it is as simple as she thinks we are up to something really exciting.  I may let her stay up one night to see the reality and see if it helps.

School know but offer little help as she is fine at school.  However they successfully manage to contribute to the situation with the way they handle things….talking about transition to new school year as early as Easter, going off timetable in the run up to Christmas in October!!!!!!

A very select (2 I think) few friends know and no family know- and without exception they are fellow adopters.  To these two people I say a heartfelt thank you as they have kept me sane (relatively) and listen without judging.  I just don’t trust that others would understand.  They seem to generally understand so little of the other issues associated with adopting so why would they understand this.  This makes me question my first statement as to whether I am ashamed…..I genuinely think my abiding concern is how it would change others views of our daughter.  She has done so well given her start in life and I don’t want people to judge her unfairly.

It is so wearing and emotionally tiring – I can’t really describe it. I feel permanently drained and exhausted.  I am always trying to be two steps ahead in an attempt to avoid any triggers.  I am often analysing my parenting decisions – I am probably my harshest critic!

If I had known what lay ahead would I have still adopted her?  Without question- yes.  I will continue to fight to access the right support for her and to love her and more importantly make sure she knows I love her unconditionally.

The Story Behind The FASD Trust

Today Julia Brown, Founder and CEO of the FASD Trust, tells as about adopting a child with FASD and how her and her husband came to start the FASD Trust.

FASDDid you watch the recent C4 programme, “15,000 Kids and Counting” following the care proceedings and adoption process for various children and families?  Our friends were equally split between those who could not bear to watch their own emotions reflected back to them from the TV screen and those like us who became “hooked”!

 

 However, the main thing that struck my husband and I was how the majority of the children featured were clearly affected by FASD (foetal alcohol spectrum disorders) just like our own kids.

 For those of you who are wondering what FASD is, it is a range of mental and physical disabilities that a person is born with due to pre-natal alcohol exposure. 

In other words, their birth mother was drinking alcohol whilst pregnant.  Alcohol, for the foetus, is an interference that disrupts normal development, particularly of the brain and central nervous system.  Unfortunately, there is currently no cure for FASD, meaning it is a lifelong condition.  It is neither, as one person optimistically suggested on the programme, something that you grow out of nor improves with age.  (The latter is something we can testify to as we parent a 15 year old with FASD whom we adopted when she was a tiny baby.)

Historically, we have both as a society and in social work practice, focused on the illegal drug intake by birth parents, over-looking the more dangerous substance, as far as the long term well-being of the child is concerned, which is alcohol.  Also, drugs and alcohol go together like fish and chips, so if you have adopted a child who has been exposed to drugs during pregnancy, it is highly likely they will have also been exposed to alcohol.

For Simon (my hubby) and I as we watched scenes of an eager young couple adopt a child with FASD, and heard them talking excitedly about plans for nursery and school (yes, I can hear all of you groaning too, whether your child has FASD or not!!!), it reminded us forcibly of our naivety as we brought home our first tiny bundle and had the same dreams and plans….

I remember despairingly asking friends, “At what age do they learn to eat without mess, getting all the food in their mouth not around it or on the floor?”  The answer, by the way, is never; Simon has just scrubbed the carpet after Dinner tonight!

Our daughter was delayed walking but once she got going was so fast that I can still run in high heels.  Her speech was delayed, but once she started she has not stopped.  Everyone is immediately her best friend, she has no concept of time and she likes paying for shopping, innocently asking if she really may keep the change!

By the time our daughter was 3 and a nursery headteacher had gently informed us that they were, “unable to meet your daughter’s significant needs”, we were forced to begin to recognise that this was more than just, “global developmental delay due to a not very great start in life”.

Aged 5, she was diagnosed as having Foetal Alcohol Syndrome (FAS) and then the doctor shook my hand and we went home.  Simon and I sat in our living room and said, “Now what do we do?”  That question began our next journey, to find information on FASD and practical support, which we discovered was in very short supply as we lived in the UK and not Canada or the USA!

The upshot was we decided we could not be the only parents in the UK with a child affected by FASD, and set out to find others. 

As we discovered them, we began with a small support group and then a local training course for the teaching staff at the school our daughter was attending at the time.  Thus, The FASD Trust was born.

What began as a “sideline” is now a full time occupation for us both.  That first FASD Trust support group has now grown to be a national network of groups.

The initial training course for professionals evolved first of all into the UK Medical & Healthcare Professionals Forum on FASD, which drew up a Consensus Statement on the Recognition, Diagnosis and Management of FASD, which we published in February 2013.  Over 70 medics from around 36 NHS Trusts contributed to the Statement.

We have since launched the Education Forum and the Social Work Forum.  We are pleased to be working in partnership with organisations such as BAAF, BASW and Adoption UK, amongst others.  Adoption Preparation on FASD and post adoption support packages for those adopting children with FASD are two of the projects this latter forum is currently addressing, whilst the Education Forum is working in partnership with schools to improve the educational experience and outcomes for children with FASD.

However, much of our work is about providing practical, personal support to those parenting children with FASD on a daily basis. 

We have a telephone helpline.  We run workshops, “Parenting the FASD Child”.  We have produced two resources to explain to children about FASD, “My Name is Sam” and “All About Me.”  A parenting book jointly written by myself and Dr Mary Mather is due out soon.   We have a Facebook Group (Friends of the FASD Trust) and a closed on line forum for carers (healthunlocked.com/fasdtrust). 

But, as we watched the TV and reflected back to the day we brought home our delightful bundle of joy, when had no idea of what life parenting her would have in store for us, no idea it would lead us to meeting the Prime Minister, to write books, to be exhausted, frustrated and to be endlessly enchanted by her latest question, saying or exploit, we agreed that we would, if we could turn back the clock, still choose to have her as our eldest child!

Julia Brown, Founder & CEO – The FASD Trust

www.fasdtrust.co.uk