Forever family

Foreverfamily

by @FASD_Mum

When we tell our son about his adoption, we talk about how we searched the world over to find the child who was going to make our family complete.  We tell him we took him over the clouds, past the moon, past the sun, all the way across the ocean to join his forever family. We surround him with the joy we felt as a family to become the unit we were meant to be for life. We didn’t know then that our son has FASD, that his birth mother’s alcohol coursed through his bloodstream and damaged parts of his developing brain. We did know he had suffered as a result of his institutionalization and most likely had problems we would all need to deal with in time.  And we happily, joyfully, consciously brought him into our world, which has been brighter, busier, livelier and more complex ever since.

Now, a year plus after The Diagnosis, we are engaging with a wider community of people affected by FASD.  This in general helps us all immensely – especially in a country (the UK) where there is no hands-on support this disability.  And yet, I also have found myself becoming discouraged by the tone of some of the FASD support sites involving parents, people with FASD, and others who work with or help support families affected by FASD.  I hear the total distress of young people and adults who have tried so hard to deal with the challenges FASD has thrown their way, but who feel misunderstood or – worse – rejected.  I hear the frustration and fear of worn down biological and adoptive parents who cannot cope with the demands of raising a child with FASD. I hear people trying to express their viewpoints, but who are defensive and unable to see past the here and horrendous now.  Knowing just how urgent and overwhelming those moments can be, I can relate.

A child whose brain has been damaged by alcohol while in utero is generally unable to match cause and effect.  They can be impulsive, disorganized, unable to remember things.  When they hit a certain point, near meltdown or in a meltdown, they can become very defiant, rude, oppositional and sometimes aggressive and/or violent.  Most people don’t understand that when this happens the underlying brain damage means the child’s reasoning part of the brain is at this point incapable of engaging. The more instinctive ‘fight and flight’ part of the brain is in control.  The only way to stop this spiral is for the person somehow, some way, to calm down.

I read reports of parents being threatened with knives and other items.  I read of kids running away and not returning for days. I read of teens getting pregnant or getting into trouble with police officers who don’t know, don’t understand or don’t care about the underlying issues.  I have no doubt that the teenager years can become hellish if a child reaches a certain developmental point and does not have – for whatever reasons – the coping mechanisms in place.  I don’t know what to say to parents and kids who are going through that now, except “know that I am listening, empathizing, and trying to learn all I can from you to avoid a similar, statistically likely fate for my own son.”

And then I read parents saying they “don’t like” their kids when they engage in certain of the more obnoxious behaviours.  Or the words of a parent who just can’t do it anymore, “We have to give him back.”  My blood chills.

Sadly “the System” falls far short for kids with this hidden disability.  There’s barely recognition in the medical and educational communities as to the existence of – let alone the extent of – this un-addressed epidemic.  There’s no consensus on how to tackle the problem, and no consistent guidelines set at a macro level on how to approach things – let alone guidance for those family members and teachers on the front lines, every day, trying to shepherd the young souls in their care toward a brighter future.  I hear time and again about families asking for help and not getting it. These families need to know everything from how to eke out of the bureaucracy support for their child, respite for their family, the best educational setting, medical interventions, medications, related therapies and advice from psychologists on how to handle daily struggles.  The problem is, this information is spread out, requires a lot of deciphering, and is hard to digest when your child is throwing books and toys down stairs, taunting a sibling, or worse.  And most professionals have not even made it their business to brush up on the related literature, which we parents are supposed to someone absorb for ourselves in this midst of this daily chaos. We are forced to become parent advocates, when really what we need most is a lie-in, a night out to relax, or someone to volunteer to take our child to the playground for us, so we can simply rest. It may sound small and petty when faced with such Big Issues, but yes, what we need most is a chance to regain our perspective.

But I do wonder, and I whisper this as I do not want to offend anyone, how any feeling of impermanence affects this already vulnerable population. “Send him back”….?  The kids must feel their parents wavering. Saying I “don’t like” you to a kid with FASD who is in a meltdown? That child will hear only that his parents are rejecting him and his disability, regardless of whether they clarify that they love him.  I have told my son from day one that we are his forever family.  If I were to change that or start to qualify that as he approaches or is in the hormonal days of puberty, the damage to him and his fragile sense of self would be devastating.  He would never be able to heal.  I would never – I could never – ever do it.  And I believe that his family’s rock-solid support and love for him are the foundation for his future.

I do not mean to offend any parents or kids or young adults dealing with some of the most challenging situations that exist. I understand that sometimes a child can no longer live safely in a certain environment and residential care might be required, just as sometimes is needed with biological kids.  I do very much mean to place responsibility for this on “The System”.  The government is failing this population, and is doing so at its own peril (and expense).  More time and resources spent on kids with FASD while they are young will mean hopefully avoiding some of the worst case outcomes.  Parents need training, teachers need training, kids need diagnosis and therapy, doctors need access to the tools that can unlock a positive future for our kids.  There is a new All Party Parliamentary Group on FASD that has been set up by Bill Esterson MP (http://www.appg-fasd.org.uk/) and that is tremendous news – but it should be more than a talk shop. Hopefully, since Dr Sarah Wollaston MP – someone else who is aware of and understands FASD issues – now heads the Select Committee on Health in the House of Commons, they will together be able to bring needed change to how government addresses FASD. These efforts deserve our support.

Those of us with young kids with FASD need action now, while our children are still tossing picture books in their frustration and before they are running away or doing worse.  Do studies, sure, but know that in the meantime there is a large percentage of this population in immediate need.  There are kids and young adults out there now, who face an uncertain future who need governmental support, now – not after more studies.  Open the doors for them.  All families can be forever families if we all work together to make this possible.  We must start by recognizing the damage that has been done to our innocent children through no fault of their own. Their behavior is due to brain damage, we have to become more comfortable saying this.  Society must treat their disability with the same dignity that others are given.  That is just fair. That’s the mark of a just society. And the building blocks of lasting families. And parents, we parents must remember even on those most frustrating of days to simply love our kids.  Their disability, like any disability, does not, should not define them or our love for and acceptance of them. They are wonderful. They are innocent. They are ours. They are part of our society. And yes, it takes a village…

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