Begging for Support

Blog_BegBy SB

There have been times in this FASD journey where I have literally been reduced to begging for the help that our son deserves and needs. Yesterday was another such day. Some boxes had been ticked somewhere in The System. I had been feeling really good for the first time in ages at the support that is in place around our child. It’s been working. It makes sense. The people involved are getting to know each other. There is a common language developing across the teams.

So, of course, without warning, yet another service had decided that because our son was doing well enough (despite having been referred here not long ago due to a series of crises) and because he had had x number of sessions, it was time to boot him out of their system.

Hold on. Wait? What?

Oh no you don’t.

Not yet.

Mamma Bear woke up and with the nicest smile she could manage laid out 10,000 reasons why this was not a good idea. We’d be happy to put all this in writing, of course, not as a complaint, but as a compliment, she said, because your service has made such an important contribution to our son’s wellbeing and because we know statistically he’s just entering the hardest years for those with FASD. You matter. This matters. Too few people out there ‘get’ FASD. We shouldn’t have to waste key NHS resources to help others who might not be familiar with our family and our son’s needs get up to speed on these things. Too often for people with FASD, it takes years for the supports to be finally put in place. Then, when they start working, they are removed. We don’t want that to happen to our son at such a critical time in his life – he’s just turning 14. We could share the stats with you if you like of the addictions, the problems with the law, the homelessness, the vulnerability he is facing as teen with FASD preparing to enter adulthood.

Please, please don’t discharge him from your service. Look – it’s been working.  We just shared with you several examples of how what you have taught him has worked. But let’s be honest, this is work you would normally do with a much younger child. What would normally come next? There are a whole host of other skills he will need to learn and master, other conversations he will need to practice. You can’t honestly believe that we are out of the woods and no other crises are likely to come up?  This service has the ability to see him until he is 19, why discharge him now?  Let’s spread out the sessions…just keep him on the books in case something else heats up. C’mon, let’s think this through.

Please, he needs you.  We need you. Not because what we are learning with you is rocket science, but because he’s now used to you, to this. It’s working. Do you need me to lie and say it’s not? He has a language he uses here. Why should he have to spend a year or more waiting for a different referral, building trust and a way of interacting with another therapist? It makes no sense. Sorry, we know you are not the one who makes the rules, but please don’t discharge him until we can speak with whomever it is who does.

I know I am begging. I am shameless about this. We are literally fighting for our child’s life. I don’t say that lightly, I mean it. We have a few years here to get this right – to give him the tools and the words he will need as he turns toward adulthood. I can tell you stories of people with FASD who we know who didn’t have support and who had to overcome things we don’t want any young person to have to cope with. This support and help matters. How is it possible that a young person with a brain-based disability who is vulnerable in many ways, who has receptive language problems, who is grappling with some of the major issues of puberty magnified by an intellectual disability that makes these years even more of a minefield could NOT qualify for your help?

Absolutely we can help identify specific goals! Absolutely we can work with you on a targeted plan. Absolutely we agree it would be good to get all the professionals around one table to make sure his transition into adulthood is getting in place now while there is time to get it right.

…and so it went…

Another reprieve. Sixteen more weeks. We calculate in our head. This will get him at least into Key Stage 4. This gets us well into the new school year. We will see what happens as these coming months unfold.

For too many, today might have been the end of the sessions. For too many, they don’t even make it this far.

Why is this such a battle all the time? This, in a country that says it is trying to tackle child mental health in a serious way while simultaneously making it so hard to access services?

How is it not a better use of resources to give people skills to be able to help them cope with a lifelong disability rather than waiting until a crisis hits, at great cost to the child/young person and the family? How is it not worthwhile to do more training for all professionals in this condition that experts believe affects more than autism?

How can we possibly leave people with FASD and their families struggling on their own when there are known strategies that can help?

Caring societies are meant to care. They are meant to open doors, make the way easier for those who need an extra hand. They are supposed to enrich the lives of those vulnerable individuals who deserve support, encouragement and understanding.

Not slam doors in the faces of those parents seeking help for a struggling child. Not tell someone whose child has a brain-based disability that it’s their parenting and not compromised brain wiring that is causing the problems. Not kick students out of schools because the educators haven’t educated themselves on the executive functioning and cognitive issues that occur with FASD. These last two haven’t happened to us but they certainly do happen all too often, in too many places.

Yes, today we had a small victory in clinging onto a service that does give us strategies. But we really shouldn’t have to beg.

Seriously, society … we shouldn’t have to beg.

 

 

Lower the Drawbridge

 

Blog VulnerabilityBy SB

Vulnerability.  I hate that word – everything about it.  I run from it. I build walls – miles-high at times – in case anyone might see me vulnerable.

I was brought up by a Scottish-American mother, a force of nature.  I was taught and conditioned to be a strong woman.  I am meant to be In Control and On Top of Things.  This is lifelong and forever because A Mother’s Work Is Never Done.  If something is broken, I am supposed to Fix It.  If something hurts, I am supposed to Kiss It and Make It Better.  I am supposed to have Eyes In The Back of My Head.  If I am having trouble and I am supposed to Pull Myself Up By My Bootstraps.  I am supposed to Cry In The Shower So No One Knows.  As a mother, I am only as Happy As My Saddest Child.  A Clean and Orderly Home Is A Happy Home.  I am supposed to Rule My House with Firmness.  My family is supposed to be My Greatest Work.

You get the point.

I have a constant stream of these messages playing in my head.  They are from an earlier time, a time why my own mother was a stay at home mom in a house of relative ease, with no major issues.  These messages don’t really translate to this life I am living now, raising a child with FASD.  Yet they play over and over and over and over again in my head, every day.  This internal soundtrack sometimes becomes my own worst enemy.  It happened this week, when we were preparing for a home visit from one of the therapeutic services we have finally been able to access.

Family matters are meant to be personal.  We are supposed to Keep Our Business To Ourselves.  If something isn’t quite perfect, we should Sweep It Under the Carpet and Put Our Best Foot Forward.  We are supposed to Show The World Our Smile.

That’s awfully hard to do when your windows are open and all hell is breaking loose, things crashing, a string of expletives coming from a child who is not even supposed to know such words exist.

That is awfully hard to do when you are sitting in yet another appointment, explaining yet again in painful detail about bizarre and concerning behaviours of your child, the details of how you cope, or don’t cope. Discussing the argument you and your spouse had or the time you did it all wrong.

It’s impossible to do as you swing open the door to your home and let in another visitor to observe, wondering if they will notice some doors are actually literally partially unhinged?  When you are feeling kind of good that you noticed and cleaned the dried spit on a glass pane before they arrived, but you are aware there might be other pockets of concern somewhere within view once they arrive.  And while the major puffballs of fur have been recently attacked by the last-minute vacuuming, you are all too well aware you still haven’t got to the root of what you fear is a pervasive smell of Dog.  It’s no longer possible to find every splat of dried bubbles that might have hit the walls or ceiling in the bathroom.  That ship has sailed and let’s be honest, you gave up trying a long time ago.  On the level of biohazards that might exist in your home, stray soap is not on the list of the worst offenders.  Far, far, FAR from it.  You just changed sheets (score one for the home team) so you are pretty sure there will be no food surprises under the covers, should she end up in the bedroom being shown how many flips can be done on the bed (with pulled-back covers).  But still you breathe a sigh of relief when in fact she was shown this trick and nothing fermenting was uncovered or smelled despite the recent episode with the bottle of spilled pickled onions that soaked through the mattress.

No, this home life isn’t at all what you had planned.

There is a tendency to hold back, hold it in.  You know people think you “over share” when you start to tell some story about some thing that is not typical, not the “norm.”  You see their faces take on that “try not to show you are shocked/surprised/repulsed/out of your depth” look.  You have to trust that they will listen and not just take away the more sensational headlines – just like the news media does nearly every single time they cover the lives of people with FASD.

Yes, it’s different.  Yes, it’s hard.  And yes, it is, in fact, your life.

So you have a choice.  You keep that smile on your face while you put your best foot forward and eventually walk right smack into a wall.  Because you will – it is impossible to act like it’s Business As Usual without eventually hitting a wall.  You know this, because you have already been there, done that.

The reality is, you need help.  More importantly your child needs help – will ALWAYS need help (even when you are not here).  By pretending it’s all okay, you are depriving your child the chance at his or her best possible outcome.  They have to learn to ask for help.  They will have to lean on others and let people into a messy and chaotic world.  They will have to TRUST that others care more about them then the state of their house.  They have learn that it’s okay to be imperfect.  And they will learn that lesson by watching you, by repeating whatever mantra it is that is the narrative in your own home.  You have to forget about your mother’s house and focus on the home you have.

That’s where it gets real.  That’s where the vulnerability comes in.  To help your own child, you need to break down those walls, let others see you at your worst.  Despite everything you were trained to do, whatever rulebook you have inherited, you have to shed those expectations.  You must show your vulnerabilities again and again to a too often unkind and uncaring world.

Because out there in that crowd, there are people who can help, people who can understand, people whose bubble splats are up there on the ceiling too.  They will be there, hidden among too many who might not be helpful and who might in fact be judgemental.  You need to armour up and go looking anyway.  You will never find those people your family needs hiding behind the illusion that everything is “normal.”

And the reality is – there’s no such thing as “normal” anyway. We need to teach our kids to love themselves as they are.  That starts with us taking that first step – loving ourselves and celebrating our lives as they are too.

“Welcome to my world” – how many times I have said that as my mother would have, tongue in cheek, self-depracating.  But “welcome to my world” can also be a positive statement of affirmation and a doorway to the future for our children.

Because really, my world is pretty darn amazing too – for those willing to look past the unidentified marks on the walls.  Our house and its striving, growing, messy, manic, chaotic swirl of emotions and movement is a place of love.  And Home is Where The Heart Is.  And Every Man’s (and Woman’s) Home Is a Castle.  I will let down the drawbridge if it means letting in the supplies and help and support that we need, admitting that It Takes A Village to Raise a Child. Showing our children that it’s okay to be who we are.

So, welcome…