A Shout Out To Our Friends (Yes, That Means You)

Blog Friends

The life of parenting and caring for a child with FASD can be lonely.  Complicated. Too often it’s distressing, the self-doubt is huge.  You can feel scared… overwhelmed..freaked…sad…angry…determined…depressed…discouraged…uncertain…lost…guilty…out of control…small.

I have felt every single one of those emotions in the last week – quite possibly each of them every single day.

Yesterday we had a local support group meeting (a group we started where none existed). It was a casual meeting, just talking with other families for two hours while our kids played together in their “FASD Club” as some of the children have started calling it – kids who normally don’t want to go out, but who all look forward to this.  For us parents too, it’s a kind of club, where we can know others won’t judge, others will relate.  A lunch with another parent of a child with FASD sitting in the rain as if it were natural, because our guy was having a blast in the mud and on the swings.  It was rejuvenating.  Even though I was bone-tired. Even though the topics can be grim. We found hope.

It’s been a long week (thanks in part to a national media blitz so insensitive to those who have FASD and their advocates that it left me stunned, drained, angry – and yes, recommitted). Last night my husband and I were so tired that normally we would have crashed at an early hour.  But a friend had heard about the week – she insisted (took no excuses) – and had our son with FASD over for a sleep over. It allowed us to chill out, spend time with our older neurotypical son.  It was low-key – we stuffed ourselves with Thai take away and Hagen Dazs, watching a newly released DVD.

Yes. I know how amazing that day may sound to those who have no such support. I feel bad even admitting this.  I know we are lucky. Too many are out there feeling too alone.

Remembering where we once were too, and how massively different yesterday was from those early days, it got me thinking how important it is to acknowledge just how amazing a role friends can play.

I take my hat off to those friends – old friends, new friends, family friends, work friends, social media friends, neighbourhood friends, school gate friends, Facebook friends, dog walk friends, smile-in-the-shop friends.  Heroes, one and all, they quite possibly have no idea how much they are appreciated.

Here’s to the friends – the ones with the kettles and the tissues.  The ones who check in regularly.  The friends who actually slow down and wait for you on the street rather than sneak around the corner as if they didn’t see you.  The ones who look past the bags under your eyes and tell you the colour of the crumpled t-shirt suits you.  The ones who make you laugh.  Who let you cry.  The ones who hold a seat for you at the coffee shop, knowing you might not come that day but who are ready just in case.

Here’s to the friends who calmly step over the shoes as they enter your house and who look past the dog hair and the piled-high counters.  The ones who don’t ask what is behind the closed doors and the ones who just laugh at the laundry drying everywhere.  The ones who ignore the unidentifiable smell.  The ones who know where you keep the tea.

Here’s to the friends who didn’t run when things got complicated.  The ones who googled rather than denied.  The ones who asked questions rather than dismissed what you were saying.  The ones who heard your concerns behind your frustration.  The ones who were confused and overwhelmed themselves but who asked rather than assumed.

Here’s to the friends who open doors others slam shut.  Friends who reassure rather than stress.  The ones who don’t tally who is doing the talking and who is doing the listening.

Here’s to the friends who believe you when you say you wish you could do x, but not this week, sorry not today, you can’t because something came up/you’re unable/things went haywire/it’s just one step too far on a day where there is nothing else to give.  They know you’d really like to.  They don’t make you feel bad.  Even when you forgot their birthday because that week there were multiple appointments/illnesses/calls from the school/meltdowns.

Here’s to the friends that tell you when you need a break – the very remarkable few who force you to take the break, and the exceptional ones who make it possible for you to…wait for it…relax.

Here’s to the new friends – the ones you meet through the struggle.  The ones who get it instinctively, who can laugh at a situation without mocking or deriding.  The ones who can give a look or a nod that says more than a speech.  The ones who have walked the walk and who can still help you find the joy on the days when it’s sometimes hard to find.  The ones who help you look forward.

Here’s to the friends who can carry you, prop you up, propel you forward or force you to sit – whether they’re in front of you, on the phone, or at the other end of the computer screen.

Here’s to the friends – the ones who see your child.

The ones who see you.

The ones who are there.

Here’s to you all – here’s one big, huge, poorly expressed, dreadfully tired but deeply felt “thanks.”

You really have no idea how much your support means.  It’s magic.  It gives us what we need to gear up, buck up, stand tall and face this with hope.

And by doing that, you are most importantly giving our child the best gift possible.  You are helping us to help him. You are fueling our resilience. You are breaking past our sense of isolation. You are giving us hope that the community exists.

It takes a village indeed.

Not just to raise a child, but to support a family.

And you are so very, very much appreciated.

So here’s to you, for those times when I might forget to say it.

You’re awesome.

—————-

P.S. – For readers who got this far and are thinking, well that’s nice for them but I don’t have any support, please know we once felt that way too.  After our son’s diagnosis sucked the oxygen out of us for too long, we knew we couldn’t do this alone.  We deliberately started to open up to others about our son’s condition and what this meant for our home life.  People are good.  When they started to understand more, things changed. It wasn’t easy, but we made a plan.  We prioritised it.  It takes a long while, but it helped. 

Here’s a piece we wrote about it: Reaching Out After an FASD Diagnosis.

If you don’t have a local support group and might like to start one, contact the FASD UK Alliance (that’s where we got started): fasd-uk@live.com

For online support – check out the FASD UK Alliance Facebook support group: FASDUK – involving nearly 1300 people just like you. (If you do click to join the group, please keep checking your ‘message request’ folder as an admin will contact you to confirm.)

If you need resources to show to family or friends, check out The National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK).

If you need some tips on how to reach out to your family, check out The Auntie’s posts on this blog.

The Samaritans have a 24-hour hotline for any who might feel in crisis – just call 116123 or email jo@samaritans.org

You are not alone.

Extended Family Can Do Tiny Things To Help FASD Families Struggling This Holiday

AuntieTinyThingsBy The Auntie

I’m learning (slowly).

You may have noticed a recent increase in tension and a feeling of impending doom in your FASD mums and dads. If you haven’t, then they are hiding it very well and not letting on (they do that!) If they tell you that everything is absolutely fine and they are looking forward to the near future, they are lying.

Why? What’s the matter?

One word.

Holidays.

They’ve arrived and mums and dads have six long weeks stretched out in front of them with nothing to occupy the little ones and still having to hold down jobs. These kids manage (or not) to hold themselves together whilst at school, but when the holidays descend there is an additional 7 hrs each day that already frazzled parents have to get through.

I have said before that just popping in for coffee can change the atmosphere in a house and can head off an impending meltdown. I’m here to remind you today that you can very much support your FASD family by doing a tiny thing.

Today I took advantage of free child labour and took SuperT to my allotment where he helped me dig potatoes, harvest radishes and beetroot and pick runner beans.

And I’m learning.

I know now that before he can dig potatoes, he has to tie today’s hairpiece just so, or it will get into his eyes.

I know that he is really, really trying to dig the potatoes properly and is not deliberately chopping bits off with the trowel.

I know that the big fork is too big for him to use properly, but using it to check that patch of ground for any potatoes that I missed (without doing any damage) makes him feel like a grown-up, big boy.

I know that I have told him a million times that those particular blackberries belong to someone else, but they are too delicious to resist, so I take him to my friend’s allotment who has a blackberry that I know she won’t mind me raiding, just once.

I know that the watering can is filled so that I can water the lettuce and radish, but actually it’s more fun to water SuperT’s hands.

* * * * *

I love the way that he shouts “POTATO” every time I uncover one, collects it from the ground and (after I told him that throwing them might bruise them) places them very carefully in the bag.

I love the grin on his face when he sees I’ve written “SuperT’s Potato” on a label for the little potato plant he’s put in the ground (I’ve no idea whether it will grow or not, but that’s not the point)

I love the way that he measured the runner beans I have picked against the ones still on the plant to see if it is long enough to pick.

I love the joy in his eyes when he realized that, as we were leaving, I had stopped the car in the track outside the allotments to let him jump out and pick wild blackberries (well they probably belong to someone inside, but outside, I think they are fair game).

I love the fact that I “have the best allotment ever!” And he was, literally, full of beans!

And when I delivered him home, dad was having a much needed doze, mum had been able to get some work done and he was in a much better mood – possibly even avoided a meltdown.

None of which I knew when I collected him. I had just listened when mum and dad had made impending doom noises about the holidays and knew that something little from time to time can make a difference. I was just after some free child labour, but what might have happened is that a possibly dreadful day melted away, rather than melted down.

You CAN do it.

__________________

A comment from @FASD_MUM:  This post really makes us smile. The day was going nowhere good, fast. The knock on the door was so welcome, and our son so excited to have his time with his auntie. He came home relaxed and proud to show us the runner beans, beetroot and potatoes. It was like night and day, the 90 minutes reprieve helped relax the whole house. The Auntie’s example is a quick trip to her allotment, but it could just as easily have been a walk in the woods, a romp at the playground, tossing a ball back and forth, splashing in puddles, a hot chocolate in a coffee shop. It doesn’t really matter whatever ‘it’ is. Our guy still craves one-on-one attention. And it is lovely to watch their relationship grow a little deeper every time they have these adventures. On behalf of FASD parents everywhere, I urge you to pick up the phone and ask if that little one might like to go for a ______. (You can fill in the blank.)

INVOLVEMENT (An open letter to the extended families of a child with FASD)

If you are sitting there reading this, wishing that there was something you could do....

By The Auntie

Don’t be scared.

Yes, you. I’m talking to you. You aunt, uncle, grandparent, family friend.

You can look on with sympathy. You can listen when your sister/brother/daughter tells you how awful their day has been. You can offer a hug when they tell you that they are struggling.

Then you go back to your house and get on with your FASD free life and feel bad that you can’t do anything to help. Or relieved that you are not going through what they are going through.

You look at your own child/ren and are thankful that you were lucky that those nights, when you had a few too many, before you knew you were pregnant, hadn’t affected your child/ren. Or you may be glad that you recognised early on that you didn’t want to be a parent and don’t have any children.

I don’t have my own children – that previous sentence applies to me. I’m a single auntie. And whilst I have had a lot of involvement with my nephews throughout their lives, I have recently realised a few things that I would like to share with you.

When your sister/brother/daughter tells you how awful their day has been, they are only telling you about 30% of it. It is actually worse. A lot worse. But they are probably reluctant to tell you everything. They’ll do this for all sorts of reasons. They don’t want to burden you; they are trying to pretend it’s not that bad; they are embarrassed by how bad it sounds; they don’t think you will believe them. Whatever their reason, they, quite simply, won’t be honest.

You sympathise, you listen and when you administer that hug, which you believe to be your only possible response to them telling you they are struggling, it will be gratefully received, but it doesn’t really help much.

So you return to your world, in the knowledge that you have done all you can.

No. You haven’t. I’m going to be brutally honest with you now because you need to hear this.

I looked on with sympathy. I listened. I gave the hugs. And then went back to my beautiful, happy calm life knowing that there wasn’t anything more I could do. And I was scared to ask.

And my brother and sister-in-law let me. This is important. They were too proud/worried/scared/desperate to actually tell us how close they were to breaking point.

And for years we, all of us, continued this strange game of “if I don’t say it out loud, it’s not happening”.

Then one day, we caught my sister-in-law off guard. The mask fell off for a split second and she did a weird thing. She was really, truly, brutally honest with us.

And I woke up and smelled the coffee. Well, we were in a coffee shop!

So, draw a line in the sand and say, ok, we’ve maybe got it a bit wrong in the past, but what can we do today and tomorrow that actually helps? There is no point in beating yourselves up for not stepping up in the past, because your suffering family probably aren’t being honest with you and being an auntie to any child is a series of mistakes and trial and error, let alone a child with FAS.

Just don’t be scared. Getting involved doesn’t mean you have to abandon your lovely life and live in the constant turmoil of your FASD family. You’ve probably got turmoil and trauma of your own to deal with as it is. Getting involved doesn’t mean you have to suddenly learn unfamiliar parenting skills. Getting involved doesn’t mean you have to take a crash course in FASD Expertise.

Getting involved can be as simple as popping in for a coffee. This can change the atmosphere in the house and if a meltdown is imminent/happening, the distraction of you popping in for coffee can change everything.

Invite your FASD child to go for a walk.

Have him/her over to bake some cookies.

Take them to feed the ducks.

Be prepared to watch while they show you the latest Little Mix DVD.

Rub their backs and tickle their feet.

Ask their parents. No – wait – TELL their parents you are going to do something with the little one for a couple of hours – what would they recommend?

I had my SuperT for a week-end before Christmas; that respite week-end you can read about elsewhere on this site. Now, I appreciate that not everyone is in my position and may not be able to accommodate a whole week-end, but after school for an hour, even just once a month, will be more appreciated that you know.

SuperT came here and made a bread and butter pudding last week.

Today I took him to the allotment for two hours.

I’m going to have him overnight one Saturday in Jan.

I’m not going back to the time when I honestly believed that there was nothing I could do. I have learned that SuperT and I can rub along nicely together and his mum, his dad and his big brother can have a couple of hours during which there will be no meltdowns. Sometimes my work takes me away and I can’t help. But while I’m home, I can. I’m not scared any more.

I know I have said that the awful stories you hear are likely to be the tip of the iceberg, but…… BUT. What you might not hear about are the moments of joy in between, because these frazzled parents might not remember to tell you about the good times. A child with FASD is capable of enormous love, extreme happiness and tender loveliness. SuperT’s behaviour with me is always great – and your little one will be great with you. You’re not the parent who has to discipline. The rules are probably more relaxed with you. You are not the ones s/he needs to rebel against, like every child/teenager ever born in the whole world will do (given half a chance!) And if it turns out that s/he does have a meltdown whilst with you and you don’t know what to do, then just ask mum and dad. And if it doesn’t work out that time and you have to take them home, then it may work the next time – just keep trying.

And you know what – you will never know, unless you try. If you are sitting there reading this, wishing that there was something you could do……. well, you know what I’m going to say…….

Smell the coffee, drink it and enjoy. (or tea!)

Don’t be scared.

——

Click here if you would like a PDF version of this to print and share:
Involvement: An Open Letter to the Extended Families of a Child with FASD

Respite (noun): A break from something difficult

Respite (noun)_ A break from something difficult

By @FASD_Mum

(Post 1 of 2 about our respite weekend)

Respite.  To be honest, I never got it.  Until we got it.  And now I see just how important it can be.  I am typing now on a Sunday morning, in a quiet room lit by Christmas lights.  The dog is snoring by my feet.  My cup of coffee is nearly finished.  Thoughts of a second one are tickling the back of my mind in a lazy, vaguely defined sort of way.  It’s the second morning in a row I have been able to slowly wake up.  I actually slept until 8.30 am today (if we don’t count the 5.30 am hiccup of the dog demanding to be let outside).  We had a nice dinner on Friday night.  We spent Saturday with friends, shopping and dining at a relaxed pace – making some spontaneous decisions, getting sidetracked once in a while in a very pleasant and refreshing way. I spent hours wrapping some presents.  We went out with friends to a local pub and stayed until the chairs were put up on the table, just like those student days.

Respite always sounded clinical to me, legalistic, some ‘demand’ that people make who have been engaged closely with ‘The System’.  And for some, it is those things. It is a right. A break provided in recognition of the important role caregivers of various sorts take on.

But we never saw how it applies to us, too.  We are parents.  We ‘soldiered on,’ as the Brits like to say.  We pushed through the tiredness, the diminishing energy reserves draining our patience and our resilience.  We just did it, because that is what we do.  That is what parents do for their kids.  For ever. That’s the deal that we signed up for equally with our birth son and when we adopted our youngest son. It doesn’t matter that our youngest has Fetal Alcohol Syndrome, he is our child and we are his forever, no matter what life throws at him or us.  That’s the deal.

But there we were having a spontaneous meal with a friend and our older son.  We were thoroughly enjoying the novelty of eating a huge bowl of sloppy Asian noodles with chopsticks, focused completely for that moment on the awesome young man our eldest has become, sitting at the restaurant of his choosing (one that did not have to have cheesy macaroni on its menu).  Then the next day, my husband and I were browsing slowly through a familiar shopping mall, the scene of many a meltdown, humming along to Christmas music piped through the speakers and not worrying if it was too loud.  There we were sipping Prosecco and I found myself actually feeling festive.  We felt ourselves lighten, interacting with our friends more freely than usual.  Our parental radar was given a rest, not constantly pinging, trying to see what was happening and whether anything was likely to slide into chaos within moments.

I feel rested, revived, grounded again, and so ready to give our youngest a huge hug when we pick him up in a little while.  I am ready.  I miss his bouncy smile at 6.00 am.  I miss his cuddles and random I-love-you-Mums.  I miss seeing him upside down on the couch searching for music on his phone.  I miss his dance routines in our living room.  I miss him.  But the part of me that loves him most is so happy for him and his independence this weekend.  I know he has had a blast, spending time with his auntie and grandmother – who have kept him engaged and active baking gingerbread, digging in the allotment, walking through fields and by streams, singing and dancing, and other normal activities slightly tweaked to make them enjoyable and do-able for him.  And they have gained new confidence in their interactions with him, they have gained new experiences, they have already offered a next time.  As an experiment, it has worked wonderfully…

…but only after I made myself more vulnerable, which is not an easy thing to do for someone who prides herself on being ‘together’ and ‘in control.’  This weekend came after I very clearly and directly said to our closest friends and family that we were struggling this month.  Proud though I am, at a moment of deep angst, I wrote on Facebook that I was tired enough to admit that we need help.  I did it then on purpose because I knew once that moment passed I would not allow myself to admit to ‘weakness’ like that.  I had thought it was obvious.  I had thought people closest to us knew.  We have been more open about our family’s struggles.  But it took my being very direct, and within hours the offer of this weekend of respite was made.  Another very direct (and difficult for me) conversation with some family members opened the door a little more.  “Let us know when you need help,” they said.  I said, “We always need help.  Just assume we need help. When it gets most difficult we are so focused on getting through the day we don’t always have the energy even to ask.”  And then I got specific.  The biggest help is to call and say, “Would it be okay to take the little guy to the playground for an hour?”  “Do you think the little guy would like to go for a hot chocolate?” Just an hour or two here or there, giving us space to reset and reinvigorate is the most precious thing anyone can do, in my opinion, for someone raising a child with special needs.

I have carried with me heavily for many years the comment once made when I was complaining about things being difficult, “Well, why did you have kids then?”  I have been feeling like I have no right as a parent to complain about the need for ‘respite.’  But now that we got it, I get it.  And if you love and are caring for a child with FASD, you need it too.  If someone in your orbit has a child with FASD under their care, please know they may not ask, but they need it.  Even an hour matters. Don’t wait for them to ask.  On their behalf, I am asking you now.  Admitting we need respite – a break from something difficult – does not mean we do not love our children. It doesn’t mean we don’t want to be with them. It means we are better able to be the parents we want to be when we can recharge our own batteries, clear out the cobwebs, and just turn that radar off for a little while so we can hear our own heart beating strongly for the children we love so much.

——

See also:

Respite (verb) – to to grant a temporary period of relief, guest blog by the Auntie