Dear GPS: Show Me the Positive Route

Blog Staying Positive is the Way ForwardBy SB_FASD

There I was.  Sitting in front of McDonalds, my 13-year old son in my lap.  Holding him in a tight hug, my chin on his shoulder.  Stroking his arm.  Squeezing his leg.  Rocking him back and forth quietly. Giving him proprioceptive input I know he needed if we had a chance of getting out of here without a huge scene.  I asked him if he knew people could hear him.  When he changed to a lower tone, I understood he was not fully dysregulated and we had the potential to turn this around. Ignoring the looks, I was actively thinking to myself how these days I really don’t care if others stare. They can keep on looking.  My focus was where it needed to be.  It was working.

It’s the last week of summer holidays.  We have nearly run out of our scheduled clubs and holiday programmes: theatre school, gymnastics, movie club.  This week we are more ‘freestyle’ (‘lazy,’ ‘lax’, ‘out of ideas’ are other ways to say that).

Our only plan was to go to the trampoline centre.  This was our son’s request, and he specifically asked that we go there later in the day, when there would be fewer people (I was pleased of the planning ahead and self-awareness this involved).  During the rest of the day, we left him to his own devices for way too long.  (So, yes, maybe ‘lazy’ is the phrase I am searching for.  Or ‘worn out.’)

It was time to go.  Optimistic and eager for an unusual family of four outing, we trundled off.  His elder (neurotypical) brother had decided to come too.  It took all of about five minutes before we hit a literal roadblock.  A traffic jam due to road works meant we had to redirect our route.  Big mistake.

Things, as they say, took a turn for the worse.

England’s bumpy single-lane country back roads are not the best place for a child with anxiety issues who had recently surreptitiously nearly OD’d on ice cream bars.  His anxiety levels skyrocketed.  We were not sure we would be able to continue.  We did eventually get there, barely seat-belted in (the belt and the bumps were making his tummy feel sick). My every bit of maternal patience was at its end (I was travelling in the back seat with him.  His brother was in the front seat.  This is our usual flying formation).  We all had to be quiet. Everything was wrong, disturbing him. He had said at one point, “Maybe I just shouldn’t go in cars.”  This was his way of saying he was really seriously struggling.

I am glad we got there.  On those single lane roads that cut through fields, the reality is we didn’t have much choice.  He had a fun one-and-a-half hours of flipping, twisting, jumping, parkouring and cartwheeling.  I got to see his new aerial move.  His backflip-into-front-flip.  His many hours of premiere gym sessions this summer have clearly paid off.  His mastery of skills is awe-inspiring.  And a great way to get his ‘ya-yas’ out, as we call it.  His elder brother came off after about 45 minutes, saying he has no idea how the little one can do so much jumping for so long.  Neither do I.  His energy has always inspired me. And yet, I could hear from the floor some of our little guy’s more excited sounds increasing as time wore on and the disco lights came on.  I suspected we had passed the therapeutic usefulness of this place, and we might be in for it when it was time to leave.  We started discussing strategies for the ride home even before he got off the trampolines.

Hot and overtired, he insisted on frozen yoghurt and a slushie when it was time to get off the trampoline floor.  We didn’t argue.  We knew we were on razor’s edge.  He didn’t eat either of them.  They tasted ‘disgusting!’  At least they made it into the trash without disaster. I will call that a win.  We had already made a deal with our eldest about McDonald’s.  Which of course meant the little guy wanted Pizza Hut.

And so there we were.  He fixated on Pizza Hut.  Repeatedly insisting he wanted pizza.  I tried to not contradict.  “You can have pizza.  Another night.” Choice words flew back at me as we crossed the very busy car park.  I told myself I was not caring (much) what others thought.  At least he didn’t run.  He didn’t hit or throw or break anything.  There is progress in this scene.  Even as we sat outside McDonald’s rocking together staring at the Pizza Hut which OF COURSE was directly across from us, I was trying hard to stay positive, to not let my own frustration show.

Then, finally, I heard it: “My brain is saying it wants pizza.  Just pizza.”

To an onlooker, that might have seemed like more of the same.  But it wasn’t.  This was a different phrasing.  His way of explaining to me, not demanding.  These are the moments that are coming more frequently.  He is increasingly verbalising his self-awareness. Even if it’s rudimentary, this is a cornerstone upon which much can be built.  This, this was a sign of having reached a short-term goal. I have trained myself to recognise these whispers of hope.  Conditioned my responses (though still not perfect.)

“I understand you want pizza.  I understand your brain wants pizza.” Several times I repeated the word pizza, so he felt heard, validated.  “Your brain is only thinking about one thing. That happens to a lot of people with FASD.  It has a name: Perseveration. You have to train your brain to think of something else when it gets stuck like this.”  Yes, I literally said that to my nearly dysregulated son, while we were rocking together right there in front of the older teenage crowd who were watching us as they were blowing off time at McD’s before the movies.

Sometimes it seems I can feel it or see it when he ‘hears’ something and stores it away.  His body goes a certain kind of still.  There is a pause.  I know even in the state he was in, he heard that word “perseveration” – we will return to it another day.  Many other days.

My husband had ordered a happy meal for him.  We walked to the car.  This time before we got into the potential torture chamber, we all stopped.  I said to our little one: “It’s your choice.  If you aren’t ready to go in the car, we can wait until you are.”  That seemed to work.  He thought about it.  He said he was.  And maybe he really was…until he discovered the lack of BBQ sauce in the bag and a phone was thrown (but not hard, it was not harmed, thankfully and the toss was instantly regretted.  Again, mini-points toward a win).

Seatbelts on, we tried to proceed out of the parking lot without BBQ sauce, but things were escalating and we decided to turn around to get some.  I think that helped, he felt ‘heard.’  Our eldest was a star, gently talking to his brother, without taking it personally this time.  The trampoline park exercise had helped them both.

With the aid of newly acquired BBQ sauce and back on our normal route, the ride home was quiet.  He went up to bed with no further incidents.  The rest of the night was okay.  (Well, with a minor blip of husband losing something leading to a house-wide and unsuccessful search.  Oh, and some last-minute scheduling snafus we only discovered while husband packed for an early morning work trip…Our lives are messy around the edges these days.  Imperfect.  We are winging it more than usual, even for us. We are frazzled. Frayed.  It is very clear we are limping along in the last week of summer.)

Even still, after it all I was left thinking:  I am getting better at ignoring some things and have actually started to train myself to focus on other things.  It is getting easier. I can ignore the stares – or if I can’t ignore them, I allow myself to stare back as I did the other day on the tube, rather than shrink away.  (If you think you can stare at my child, I can stare at you.)  I can increasingly ignore the tut-tuts and the sideways disapprovals.

More importantly, I can listen much more attentively to the nuances of my son’s – both our sons’ – moods and needs.  I explained to our eldest when we got home that I think that was progress tonight, trying to help him see beyond the roadblocks, to see the markers of progress we are reaching.  Six months ago or a year ago we would have experienced total disaster this evening.  As it was, it was awkward.  It was tense.  But it was not a disaster.

So, here we are, nearing the end of the school holidays.  This year it has been better than most summers, but far from ‘easy.’  Some may say I am the eternal optimist/clutching at straws, but that is the only way I can see through to the tomorrows I want for our family.  Like entering instructions into a GPS, this determined choice to take the positive route is the only roadmap that will get us there even if it is not the most direct or obvious way forward.

I believe we are heading in the right direction.  I insist on amplifying and marking these signs of hope.  As the song once said, “it’s got to be the going, not the getting there that’s good.”

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Yes! Follow THEIR Dreams, Not Yours

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By SB

Children with disabilities too often hear ‘no’.  This was true for our little one who has a neurodisability as the result of prenatal exposure to alcohol – a Foetal Alcohol Spectrum Disorder (FASD).  Before we understood that his brain was simply not wired to respond quickly or intuitively to a world he found deeply overwhelming, we kept ‘correcting’ him.  Every day he heard in a thousand different ways that his instincts and his responses were somehow wrong. That was our fault, not his.  We moved too fast for his brain to process it all.  Unknowingly, we threw him in over his head time and time and time again. We were too slow to hear what he was telling us, too slow to react to his needs.  His behaviour may have been the focus, but we were the ones who needed to change. He was finally diagnosed with FASD at the age of 10, but even after the diagnosis it took time for us to adapt to the implications of his brain damage.

Things started to improve when we started to listen to him, really listen.  We realized that while he cannot always phrase it well, he has insights into his condition that can help us to help him.  It became a positive loop – the more we listened, the more we understood.  It took some detective work and some professional input, but the more insight we had, the more his anxiety decreased.  The more relaxed he was, the better he could express himself.  Being more able to understand his perspectives allowed us to agree or at least discuss strategies.  Slowly, with this new shared understanding, we all started to come up for air.

One key element was seeing the world from his perspective – understanding the impact of the negatives we were showering over him with our (we thought) gentle ‘helpful’ reminders.  We dropped the ‘no-s’ and ‘don’ts’, and we started to say yes more often.

Accepting he would always need support, we set out quite deliberately to build a network around him, and began to prioritise settings where he was better understood (including moving to a specialist school).  We also came to appreciate that as hard as it was for us to wrap our heads around the diagnosis, it was harder for extended family, friends, teachers, and people in the wider community.  So, we opened up about our lives, his struggles.  We very carefully and consciously helped educate those around him about FASD.  We tried to face it all with positivity.

Life-changing stuff, that turned out to be in ways big and small (even if it is still a work in progress, as readers of this blog will know).  It included me giving up a career of nearly 30-years to work on raising FASD awareness full-time.

But this wasn’t one-directional.  Our son also has stepped up and has led us to a whole new understanding of what he can do with the right kind of support.

I’ll give you a rather extreme example.

Our son doesn’t see or experience the world the same way we do.  But that doesn’t mean he doesn’t have his own dreams.  All kids do.  Our guy has in his head a definite picture of where he wants to go, what he wants to accomplish.  Specifically, our son wants to play Wembley.  Or the O2.  Preferably with Little Mix.  You probably just smiled.  But please know, he is dead serious about this.

All those years he spent watching Hannah Montana, perfecting the songs and dances.  The hundred times he watched the DVD about how Justin Bieber became a star.  The disappointment when his YouTube channel didn’t get a million views once we set it up, and the belief it still will someday.  Each and every night spent in his room blasting Little Mix, rocking and memorizing and absorbing the music into his very soul.  Engaging his muscle memory, using music to perseverate on something, to focus his mind, to help him relax, to help his body know when and how to keep it all together.  Countless ‘concerts’ in his room with stuffed toy ‘fans’ and toy stage lights aimed just so.  The years of shopping in charity shops for costumes.  Researching stage lights.  Contemplating how curtains rise and fall.  The years of music and singing lessons.  Ongoing involvement in local supportive theatre groups.

Our guy has been preparing mentally for his Tour for a long, long time.  And in his mind, this was and is very, very real.  A dream this big could be heartbreaking. Some might say we should ‘nip it in the bud’ to avoid profound disappointment.  And yet…

There was and is no way on this earth that I am going to tell this child that he will not make it to Wembley.  Because, really, I don’t know that.  He just might.  And he sure isn’t likely to get there if we don’t believe he can.

Over the past several months his conversations about his Tour became increasingly insistent.  He wanted so desperately to perform, but couldn’t quite figure out how to make it happen.  He was becoming frustrated.

So, we thought outside of every box, and decided to give muscle to his dream.  We rallied all those people around him who could help and we simply said yes.

Yes.  We will help you bring your rainbow-coloured Flashing Lights Tour to life.  Yes, people will come to see just you perform.  Yes, seriously!  You can do it.  We told him his grandmother rented a school theatre.  Oh, if you could have seen the light that sparked in his eyes.  He went to work.  He orchestrated it all.  He designed the stage.  He planned, practiced and rehearsed his ten-song set list at school and with his voice teacher.  We designed posters and Tour merchandise.  Thanks to his auntie, he had five costume changes all lined up.  Another auntie agreed to be MC, fully prepared to support him in whatever way he needed that night.  A teacher arranged things in the sound and light booth – not blinking when he said he wanted it to look like the Ariana Grande stage, showing how we could improvise.  About 50 people agreed to attend.

When the night finally arrived, we weren’t sure how things would go.  During the sound check he closed into himself.  He looked frighteningly small and alone on the big stage.  With a thud in my stomach, I started questioning this whole idea.  But in one of the most eye-opening moments of the whole experience, we literally saw him stand taller, more confidently when two of his young friends arrived early and started to cheer him on in practice.  Singing for them, he expanded again.  I knew then that the night would be golden.

It started with the ‘Meet and Greet’ – adoring fans clamouring outside his ‘Tour Bus’ (a superb addition provided by a friend).  His ‘security guard’ then hustled him into the theatre.  Curtains opened and for about 45 minutes our little one filled not just the stage but the whole theatre with his presence.  The audience were armed with tour tags on lanyards, LED lights, glow-sticks, colourful scarves to wave.  Song by song he grew stronger, more confident until the almost impossibly perfect moment during the encore when he became complete amid confetti canons and massive balloons bouncing across the stage and around the adoring and cheering audience.  This was the grand finale he has so often dreamed about!  He floated through the After Show party and during his ride home on the Tour Bus.

For this one night we removed all the roadblocks, and we said one big, huge, concerted “Yes!”  We stepped so far out of the mold it was a bit scary for us all.  It was a risk he was willing to take, so we took it.  We showed him that his dreams can come true, that we hear him, that we will cheer for him in the way he choses to present himself to the world.  Rather than encourage him to fit in to a model that was never created for him, rather than encouraging him to keep his head down so as not to attract attention due to his vulnerability, we said yes.  Maybe it was counter-intuitive … but we did exactly the opposite of what would be ‘safe’ for him as a child with a disability.  We followed his lead and put him up front, under the spotlights, right there on centre stage, precisely where he wanted to be.  Where he deserved to be.

And the unexpected happened.  All the glitz and attention calmed him.  A family member summed it up, “He was totally fulfilled, therefore he was totally at peace with himself. He would have done that performance to ten or 10,000. It was his place, his dream and his achievement.”  (He later said to me, “Mummy, I wouldn’t be nervous, I could sing to 30,000 people.”)  A friend observed, “The people, the songs, the atmosphere – he breathed in (his form of yoga) and found himself calm and in control after the performance.”  It never dawned on me that this was a type of self-regulation.

In creating space for him to give of himself so fully, we all became that much more complete ourselves.  “His zest for life is infectious!” one friend said. “Who else can get a room of adults and awkward teenagers dancing and waving scarves?! We all left with aching mouths from smiling and feeling very proud.”

Another friend quoted Audrey Lourde, “It’s not our differences that divide us, it is our inability to recognise, accept and celebrate those differences.”  For that night, we were united in our son’s world, and boy did we celebrate those differences.  And it was a blast.

The whole evening was full of sparkle and colour.  His effervescent spirit held us all up just that much higher.  We were all there with him, for him, because of him.  This was his 13th birthday celebration – his chosen way to joyfully enter teendom.

I know not every child can get on stage and belt out ten songs in front of a crowd while dancing in glittery costumes.  But every child has some one thing.  Whatever that one thing may be deserves oxygen and sunlight so it can grow.  If we listen closely enough, and help our kids follow their dreams (not ours), we are planting the surety in their souls that they are heard, they do matter, and this world sparkles and shines more brightly because they are here.  Maybe to you my family sounds bonkers.  Yes, we did this Big.  Large.  It was most certainly over the top.  That was a conscious choice.  We chose this, rather than a holiday.  It may be unusual to spend an evening simulating a pop concert instead of going away – but this was oh so much better than scurrying off in a car where he’d meltdown to some place where he would be overwhelmed and lost just because that is what people do for holidays.

The memory of this night will last forever.  Hopefully it will always be with him, deep inside, on those dark nights when self-doubt starts to gnaw away.  Hopefully this experience will serve as some kind of insulation against the relentless onslaught on his self-esteem that we fear the teenage and young adult years will involve.

Come what may, for this one glorious night our little one was up there, giving his all to a room full of people who were quite happy to hear HIS voice.  We weren’t telling him what to do, he was showing us what he can do.  For this night, he was surrounded by the thunderous applause of one huge and resounding “Yes!”  For this night, he shone forth in all his magnificence.  We could see – literally see – the network we created cheering him on.  The thought of that still brings me to tears, even if I was too busy at the time jumping and dancing in the front row to understand then the full impact of the Flashing Lights Tour.

We must have done something right.  The first words out of his mouth the next morning were “Mummy!  I had a dream about going on tour again!”

 

 

 

 

 

 

 

Ten Tips for a Holly Jolly Christmas – Inclusion, FASD & That Christmas Dinner…

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By @FASD_Mum

Ho Ho Oh Boy – it’s Christmastime. Again.

For those in the greater FASD community who celebrate Christmas this time of year is challenging.  Feeling more like Scrooge than we care to admit, we jump out of bed each morning with an eye toward Christmases Past, Present & Future.

Christmas Past

We have suffered the defeat of Christmases past – when time and again expectations have been dashed by the hard realities of life for a child with FASD.  Flashing lights.  Sparkly tinsel.  Spinning decorations. Dropping pine needles.  Anticipation.  Confusion. Disbelief. Unbearable excitement.  Inevitable disappointment.

Ten Christmas truths as we have come to know them from Christmases Past:

  1. Not all kids can handle the idea of a big man dressed in red coming down imaginary chimneys.
  2. Some can handle even less the idea that it might not happen.
  3. Santa’s naughty or nice list can cause great anxiety for kids who have trouble controlling behaviour. In our house, kids know Santa gives points for trying.
  4. Schools have no clue how much toll those extra events can take on some kids. The lead up to The Day can be daily chaos for kids who need routine.
  5. It can matter greatly if a tree starts to shed its needles early. Last year our son panicked every day for a whole month.  This year we have an artificial tree.  (Still in its box along with all the other decorations, I might add.)
  6. Christmas light speed dials should be banned.
  7. That fact that it doesn’t snow in every town on Christmas Day can cause great distress for some kids who think Santa’s sleigh needs snow to land. This isn’t ‘cute’, this is a serious worry.
  8. Most toys have a half-life of joy measured in nano-seconds on Christmas Day.
  9. For some kids, sitting for that famed Christmas dinner is a mini-torture zone.
  10. The pressures on parents/carers to maintain calm for hours can suffocate the joy out of any lighted Christmas pudding.

There is probably not a parent/carer who celebrates Christmas with a child with special needs who does not put their head down on the pillow on Christmas night without a huge thankful thud that it is over for another year.  Who among us has not sworn we will never do it that way again….

Christmas Present

And yet, here we are, preparing for Christmas Present, ready to repeat/endure the same routine.

This year, please have a thought for families who may be struggling, those who need a change.  Those who see a train wreck coming and are asking in ways big and small for your help.

The weight of Tradition is bearing down on us, suffocating us.  We are already balancing as best as we can the demands in our own homes, let alone bringing our particular road show to others’ houses.  We desperately want to feel festive.  We want so much to have fun, to be reminded of what it is like to feel relaxed and joyful that it is Christmas.  But we too often feel alone, stressed, isolated, and perhaps depressed.  We are tired, even if we have plastered a happy smile on our face for the kids and for you.

Ten tips for helping a family with FASD through this holiday:

  1. Give them time to prepare – offer to take their kid(s) for a walk or out for hot chocolate, or for a sleepover one weekend before Christmas. They have some elving to do and really could use the time to feel the fun of it.
  2. Offer to help put up lights and decorations when the kids are out at school.
  3. Treat the parents/carers to a festive lunch one day while the kids are at school, before Christmas holiday madness happens.
  4. Plan to have a special activity with the kids during the holiday – plan ahead, let that be your present to the child. A movie, a trip to a soft play area, ice skating, a trip to a special pool – anything.  Believe me, the parents will worship you for it.
  5. Keep celebrations short – holiday marathons are not made for kids who sprint.
  6. If you are worried about ornaments breaking – remove them before kids with FASD arrive, do not let the focus of the day be everyone telling the kid to stay away from shiny, sparkly, intriguing things they are never going to be able to ignore.
  7. Ask ahead what the kids might eat – it is nowhere written that mac and cheese is banned from a Christmas table.
  8. If you know adults with FASD – reach out to them before Christmas, ask how they are doing, see if they need help planning or shopping. Ask what’s on their minds.  Some grapple with past traumas that would bring most of us to our knees.  Invite them over if they have no where to go.
  9. If someone you know struggles with addictions, don’t serve alcohol if you have invited them to your home.  Show respect.  At the very least be sure you have some fun sodas and non-alcoholic treats.
  10. Give people the space they need – have somewhere quiet ready in case a person with FASD needs to have a break, and let them go there without making them feel bad, without any jokes.  The pressures each feels are very individual, please be flexible and understanding and do not interpret their needs as a personal criticism.

Christmas Future

And then, there are all those Christmases Future.  As challenging as our past and presents may be we all have a wish for the future – to ensure other families can avoid having to face these challenges altogether.  The most important gift in the world is the gift of health.

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There is great pressure at this time of year to be ‘festive’ – to have another cocktail.  To toast a new year coming.  People make merry in lots of ways.

Statistics show that “December is the month when the highest number of babies are conceived and the month in which the highest amount of alcohol is consumed. (Office of National Statistics, 2015).  It is crucial therefore that families are aware of guidelines about the effects of prenatal exposure to alcohol and developmental risk for children so that they can enjoy the festive period more easily.”  (See the excellent article by Carolyn Blackburn, “Did You Know More Babies Are Conceived at Christmas Than Any Other Time of Year?”)

If you think you might be pregnant, if you are trying to get pregnant, or if you are having sex without birth control, remember, remember, remember it’s not just about this year, but all those years ahead.

The UK Chief Medical Officer says “The safest approach is not to drink alcohol at all.”

Here is a video by Lee Harvey-Heath, an adult with FASD who encourages people to see the world through his eyes via his Facebook Page (which we strongly encourage you to ‘like’) and other outreach.

 

One Final Thought

And yet, for all the angst, there still is nothing better in the whole world than to see a child’s face light up in that first magical moment on Christmas morning.

 

 

Christmas Gift Ideas for Little Ones With FASD

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By @FASD_Mum

This is for those of you who, perhaps like us, may be behind in the Christmas shopping department and who may be looking for gifts for those little ones with FASD.  These are some items over the years that have been big hits.

Apologies, many of these links are for UK sites – but most of these items are available elsewhere.  These are suggestions only, of course we can’t endorse any specific product.  We understand all kids are different, what calms one may have the opposite effect on others.  But in case it’s useful, this is a glimpse into what has worked for us over the years.  (There are lots of great items available on sensory toys websites.  Here is one example of a great site.)  Christmas isn’t just about presents, and for our kiddo less is often better.  We are posting a variety of things here, just to get those creative juices going if, like us, you are staring into these coming holidays like a reindeer in headlights.

Our main point is that while some of these might not seem like presents you may have wanted as a child, they might be extremely welcomed by a sensory-seeking kid.  So, think outside of the box.

A heavy furry blanket.  Our guy has one he uses every single day, it’s great for sensory regulation and calming.  I have no idea if this one is heavy, it’s just an example.    screen-shot-2016-12-04-at-10-28-02-am

Soft colour changing pillow.  This one is really soft.

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Emoji bedding – we have used an emoji duvet cover and emoji pillows to help develop strategies for how to go from angry to happy (see this blog post) and to help him describe how he is feeling.  (We also have been known to encourage throwing the emoji pillows at a bare wall when frustrated or punching the pillows…) He loves emojis!

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Sensory den/dark pup tent.  We have always wanted to have enough space (and money) for one of these or a bean bag chair (there are lots on that site, including some great full body loungers and some for teens).  You can be creative.  We have improvised by the bottom of a closet as a calm space for our guy.  Previously we hung curtains around the bottom of a bunk bed and put in special lights.screen-shot-2016-12-04-at-10-33-41-am

Bath items – GelliBaf, foaming bath soap, lavender bubble bath, bath cups with different holes in the bottom

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Fidget bag – lots of options for creativity here, great stocking stuffers (this is only one example) or maybe a fidget pencil case for those who have trouble sitting still in class.  Pencil fidget toppers or a chew buddy necklace also can help.

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Clothes – our guy loves compression shirts and tights, anything with spandex and without tags.

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We haven’t bought weighted vests or expensive weighted blankets, but we have used lap pads and weighted warmers.  This one looks fun.  We used to have vibrating bug massagers and Ps and Qs for chewing.

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Always wanted a body sox, but suspect we waited too long.

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Safety mirror for those who tend to make things sail across the room.

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Galt marble runs have been a favourite in our house for years (though marbles do fly, and should be avoided for kids who put things in their mouths).

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Hands-on is great.  We have had success with magic sand (though be vigilant, we heard one family had a struggle when it was washed down the drain), play doh – our latest is the ice cream shoppe, play foam (but beware it’s very sticky).  We also have in past just given a huge plastic bowl so he can mix ‘concoctions’ in the kitchen.

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Also spinning paints, spinning markers, Spirograph JuniorGears! Gears! Gears!  (Yes, there is a theme here…)

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Disco lights (we have many, but not this particular one). A bluetooth speaker with LED lights was also a big hit, worth checking out if you have technology.  There are many options for inexpensive sensory lighting, such as this one.  Have a google.

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Jumping items – a must when our guy was younger – sadly our garden isn’t big enough for a trampoline these days.  But a kiddie trampoline for the young ones would be top on my list (there are sturdier ones from disability aids websites).  Skipping ropes are great too, and cheaper.  Exercise balls can also be great for home use, having a kid just sit on one and watch TV or when doing homework can really help give that little bit of input – but in our house they fly too often for comfort.

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Swingball – endless hours of entertainment

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Books – we have found that our guy has a different relationship with books than our elder son.  He does better with hands-on books, like the Usborne Lift the Flap books (which actually contain some higher level info but more easily accessible for him, in little bursts). See Inside Your Head was one we used to help him start to understand his brain (though it’s not FASD related, we found it useful).  (When he was smaller all the touch and feel books were essential, like the That’s Not My… series.)   DK Eyewitness books for kids are also a hit, again very visual and short bits of info. DK Eyewitness classics are also a great way to introduce literature – like the other DK books they also have short bits of info and lots of visuals around the main story.  A Christmas Carol might be a timely one. (Some of these are out of print.  We often buy used books, we call it recycling.)  We also have had success with books based on movies like the Spy Kids or some of the Disney stories – the movie visuals in the books seems to help him focus.

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Things scented.  Scented markers, scented pencils, scented stickers, scented bubbles, and the latest craze – Num Noms (ridiculously expensive but for a kid that loves smells I can see why he likes them).

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Time timers – these are great – for kids who can’t innately understand the difference between 5 minutes and 5 hours, they show how much time is left visually.  (We sent some of these into school.)  There are some cheaper versions or the larger more expensive ones. We also tried a clock that changed colour every hour, but he hated it in the night (he needs a pitch black room to sleep.)

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Some traditional games – Bingo! with a spinner.  Candy Land is still a favorite – (based on moving around by colors) and also Story Cubes, Spot It/Dobble.

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Learning games – We’ve had recent fun with Lazer Maze, Gravity Maze, and Snap Circuits electronics kits (that we have often found used on eBay).

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Lego – our guy never got into Lego until we got some Lego Friends.  We think the traditional Lego people were too abstract for him.  And then he loved the Lego friends performing sets.  There is always some Lego set that would appeal to most kids.

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Technology – our guy has a love/hate relationship with technology.  We have found some things work better than others.  The entire LeapFrog range was always top of our list, very sturdy, good educational – and the toys go from very young phonics magnets up to a LeapPad (which he still uses).  We have had good luck with the Amazon Fire tablet for kids, (though we got it on sale). Same with the  voice command Amazon Alexa speaker (less to break), which we also got on sale.

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Topping this year’s list?  Bean Boozled 4th Edition party game (these come in smaller packs as well).  For those who don’t know, bean boozled jelly beans have two flavours for each colour – one pleasant and one disgusting.  For our sensory-seeking son, getting a small pack of these is often a highlight on a Saturday – he films himself trying them and spitting out the horrid ones.

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He’s also desperate for Pie Face.  I think I see why.

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There are so many things he wants in the ‘made for speed’ category.  He has a scooter that sparks, that was a highlight of last year’s Christmas.   Some of his other demands we consider too deadly to consider: hover boards, skateboards, Heelys, etc.

This seems like a feeble attempt to lay out some ideas.  The main message is to ‘think sensory’ when considering toys.  Don’t try to push them to a new level if they are not yet ready.  Puzzles, dress up clothes, dolls – lots of those items that little kids like big kids might still like and need.  It takes some shedding of parental expectations to find those toys that will help them grow but also provide fun rather than frustration.

If you have other ideas, please feel free to share them in the comments section below.

Extended Family, FASD, & Halloween Happiness

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By The Auntie

I currently have two pumpkins sitting in my kitchen, one of which I will help my nephew carve when I have him over night on Wednesday for another of our sleepovers. I have never carved a pumpkin with him, don’t know if he will enjoy it, but this we will discover.

For the last couple of years, I have found myself at home for Halloween and I LOVE Halloween. I have fond memories of eating silly, “disgusting” food, dressing up and apple bobbing as a kid.

Nowadays, it’s all about the trick or treating and no-one seems to do the traditional games any more, so I decided that I was going to introduce the kids in my family to a couple of them.

And yes, I dressed up. I like dressing up. The first year I was the only adult that dressed up. Last year there were more.

So here’s the recipe …….

  • Make a finger food buffet and give it Halloween style names.
  • Make your own costume – a sheet for a ghost; a ripped T-shirt and some face paint makes a zombie; black clothes and green face paint transforms you into Elphaba – use your imagination and it doesn’t have to cost a fortune.
  • Buy some apples.
  • Buy some doughnuts and string.
  • Put the apples in a washing up bowl full of water and bob – I can promise you that the adults WILL get competitive!
  • Eat the finger food – this has to be done before the doughnuts – use the doughnuts to bribe little people into eating some proper horror food.
  • Tie the doughnuts on the string. The contestants lie on the floor and have to eat the doughnut from the end of the string which is held sympathetically by another contestant.

At some point in the evening they will want to fit in trick or treating, you fit it in where appropriate.

“So,” I hear you say, “That all sounds like fun stuff to do – why is The Auntie making a point of it?”

Festivities are always a trial for families of kids with special needs. In the frazzled environs of day to day life, planning anything more than managing to get out for some trick or treating is near impossible and our kids with FASD can feel let down, left out, or overwhelmed.

By giving up a few hours time prepping some food and organising a couple of silly games, you can give your families affected by FASD an evening of smiles, silliness, rest and respite.

Even if you don’t want to do the food bit (you could always ask whoever is coming to bring a contribution and have a pot luck dinner) you can still give your families a moment away from the everyday trauma. The new school year adjustments are ramping up. You can give them a tiny oasis away from that.

Yes, it might only be a couple of hours. But, for our families, those occasional moments may be enough to knock a couple of straws of the camel’s back.

Happy Halloween!


P.S. from FASD_Mum:  What The Auntie may not know is how many challenges her Halloween parties have solved for our son with FASD.  His sensory issues make walking around during cold nights wearing costumes and masks a real nightmare for him.  He gets freaked by some (most) of the Halloween decorations, especially at houses where there are decorations with loud noises and surprises.  He is intimidated to walk up to people’s doors, takes too long to choose which candy he wants … it becomes very overwhelming, very fast.  He is starting to feel a bit out of place, at the age of 12, when so many of the kids are much younger, but emotionally he is still at the age where he wants to participate.  Too much trick or treating yields too much sugar, which has its own host of problems (if there is candy in the house, it will be eaten until it is no longer there – our guy is not one to pace himself and it is impossible to hide it away, candy-related meltdowns are guaranteed at this time of year).  In many ways he is just as happy staying inside and giving out the treats as he is knocking on doors.

The Auntie’s family-focused and extremely fun but low-key parties have been perfect for our son.  They are a sensory treat for him (bobbing for apples!).  Most of the activity is at her home, with a few visits to trick or treat at the homes of neighbours who know the family well.  And the real joy is that in her enthusiasm to do something she loves, she hasn’t even realized just how perfect these parties have been for our son with FASD. 

Spending time with a child with FASD can be great fun, and it’s all the more exciting when another extended family member includes them in something that they really enjoy.  Sometimes only a few modifications are needed, and the kids build such positive memories and family relations are strengthened.  Maybe this particular kind of party would not work for all kids, but I would bet there is some way to plan just an hour or two this Halloween that would really make a child light up with joy and give the whole family something to feel good about.

And then, of course, if Halloween is too soon, there is also Bonfire Night…

Further reading:

Halloween Ideas for Kids with FASD

Acceptance for this All Hallow’s Eve

 

FASD Parents Have to Suit Up

Suit up.jpgBy @FASD_Mum

I sat by the poolside, torn between admiration and brewing frustration.  We are on holiday and our son finally has the chance to swim to his heart’s content.  It is so deeply satisfying to see his sensory needs finally met.  It turns out all it takes is a large indoor pool, a Jacuzzi, a steam room, and a sauna.  I have spent more time than you might imagine, watching him smiling in that Jacuzzi wondering if we could rig up something like that in our bathtub.  I was thinking of my younger days as a “Jersey Girl” – where summers meant deciding what beach to go to or whose pool you would swim in that day.  I felt a little sad that our guy doesn’t get this full experience in community pools in “The Shire”.

Of course, the magic of it all started to wear off sometime around 5.45 pm.  That was (my admittedly random) designated time for him to get out of the pool.  We had gone back to the pool in the late afternoon.  I had already spent hours in the morning/early afternoon being steamed, bubbled, floated and baked (I loved it all).  But for this second trip back to the pool, I decided not to bring my suit.

Big mistake.

At 5:45 pm, my cherub made clear from the middle of the pool, with many witnesses, that this was way too soon to get out.  He was in fact not yet tired and was having a blast.  I specifically chose not to draw battle lines.  By 6:30 pm I was remembering a time from my childhood when my brother put an eel in the pool – that little thing was super quick to dart to opposite sides of the pool each time he tried to get close to it.  The parallels were remarkable.  My husband had come to the pool at one point, also in street clothes, perplexed at what was taking so long (since we were missing out on dinner).  I sent him back with the instructions if we did not return by 7.15 he should come with his swimsuit.  Above all, I did not want to have a battle in the pool.  We are here for a week.  I want this space to be happy.  It was after all my own mistake for not having my suit.  I wanted this to be a great day for our son.  He had to eventually grow tired, right?  (Wrong.)  I was bored, my phone had run out of charge, and my “I’m cool” façade was cracking.  But I was not going to let this end badly.

The thing was, this was one of those times when people were thinking “what a poorly behaved kid” – and those moments put my back up in a way few things do.  I was trying to be subtle, trying to keep my voice down, but really there is only so much you can hide about the scene when your little dolphin boy heads to the bottom of the pool every time you try to talk to him.  One woman even tried to talk to him to get him to come out (my husband quietly thanked her and explained he has a disability so this was not just the pure disobedience that it seemed to be on surface).

And actually, our son was spectacular.  He was in his element.  He was having a great time.  After he nearly knocked into another kid, that little boy came up to me.  I thought he was going to be cross.  Instead he whispered, “How did he learn to be such a good swimmer?”  By which, I realized he meant, “How did he learn to do those tricks without killing himself?”  So I told him he takes gymnastics, and he is fearless.  The little boy’s eyes were shining, “That’s me as well! I take gymnastics.”  Turns out our son was a bit of a hero in his kid’s eyes for all his one-armed cartwheel dives and flips into the deep end.  Our very literal son had already decided the “no diving” sign did not apply to these moves since he was going in feet first.  I could not find fault with his logic.  And I was also kind of in awe – I had no idea he could do half of those things, though I did draw a line at aerial cartwheels, since even he admitted he has only ever done those on the mats.

Perhaps even six months ago I would have dug in and got my son out of the pool at the agreed time.  I am sure many of you reading this will think I was wrong to let it slide so long.  A few months ago, I might not have realized the beauty of his thinking when I pointed out to him at 7:02 that we had agreed he would get out of the pool at 7:00.  He got a huge smile on his face and said “But it’s not 7:00, that time has passed!” before he swam off and under the surface in triumph. Genius, really, when you think about it.

We are on holiday.  The time that I chose for leaving the pool was arbitrary.  The point of the holiday is to have fun.  He was having fun.  What good would it have done if I dragged him out by one arm or if I had gone in with my dress to haul him out?  The standoff would have a natural conclusion at 8:00 when the pool closed anyway.  How lucky we were that the young woman who worked there agreed to say nicely to him that if he wanted a shower he needed to get out a few minutes before 8:00.  How lucky was I that my sister (on holiday with us) had sent along a pair of new flip-flops “from the piskies” (Cornish fairies) and that my husband was quick thinking saying he could only have the present once he was dressed?

So rather than what might have been a screaming, dripping, kicking battle, at a few minutes past 8:00 he came running out waving his note from the piskies.  Happy.  Joyful.  Tired.  Exhilarated.  I know we can’t always give him such leeway, but tonight it was possible.  Tonight, we put his needs first and we were rewarded with a content and satisfied child.

The day before?  That was another story.  That day did not end well.  That day – perhaps due to tiredness, lack of food, lack of sleep, or all of the above – our son had a meltdown in the garden of the rental house.  He tossed broken toys into the bushes (it’s not clear if the meltdown started because one of these was already broken and not working).  He threw a rock hard at my husband and hit him in the side of his face.  Our relatives who have not yet seen such a meltdown were freaked, but I could not stop to worry about their reaction in the midst of trying to find where our son had gone (not far, as it turns out).  It was a horrible scene.  The gap between what we knew we needed to do and our relatives’ instinctive reaction was huge.  I knew we needed to be quiet and reassuring so we could avoid any further escalation in this strange place with lots of winding paths that our son could easily get lost in.  They thought I was uncaring of my injured husband, when that was far, far from the truth.  They were stunned, scared, and confused to see just how far from “traditional parenting” we have gone.  I realize in retrospect that even for the most informed and caring extended family members, if people are not involved daily in our lives, the struggles can seem alienating, and the worst possible time to try to explain it is in the middle of a crisis when our son’s needs due to his disability must come first, even if we have to mop up hurt feelings for days after.

I found our son just outside the gate, looking at blackberries.  He was uncertain, standing near but fearing our reaction.  He was struggling to gain self-control.  I could see his shoulders were not yet relaxed – we were on razor’s edge.  This could either dissipate or escalate.  I didn’t say anything, just walked him down a wooded path.  He reluctantly let me hold his hand.  I surprised him by showing him flowers that matched my dress (the first thing that came to my mind).  Random enough to shake him back into the moment.  Fragile still, we walked straight home and directly into the bedroom where he finally went to bed.  Apologies to his dad waited for nearly 24 hours.  And that was ok.  My son and I talked it over in the restaurant at lunchtime.  I told him we understand it was hard, with so much that is new (we had only recently moved from the house we stayed for the first week of our holiday to this new place with so much to absorb).  He had assured me, “I am not going to have a meltdown at you Mummy”.  I so much wanted him to be able to keep that promise.  That is why I sat by that pool for an extra two hours.

The holiday has been not easy, but not impossible.  The first day it nearly ended before it really began.  Our drive that was supposed to take four hours took nine (in part due to traffic, in part due to the fact we simply could not travel with our son as dysregulated as he was).  That day was perhaps the worst we have ever had – a full blown public meltdown in a roadside café with picnic tables surrounded by tiny stones that were oh-so-easy to scoop up and throw.  We were all a little stunned and sad.  I was wondering if I would need to take him home on a train.  But we picked ourselves up and continued.  As usual, the benefits outweigh the hard parts.  We suppress our sadness that he finds it all so difficult, because we see he also feels great joy in these new experiences.  Watching him conjuring the waves is the stuff of lifelong memories.  He runs into the water up to his waist, stands defiant in the face of the sea, and like a conductor motions for the waves to rise and fall, giggling when the waves inevitably win as he cartwheels away from them.

Suddenly the summer seems too short. These opportunities seem too few and far between.  It has been so nice to see our son (relatively) unstressed now that he is not gearing himself up for school every day.  I dread having to shop for school uniforms in two short weeks.  I don’t want to see the tension creep back into his now suntanned little body.

So, seriously, if he wants to swim a while longer, why not?  OK, sure, next time, I will be ready.  Parenting a child with FASD demands we suit up and remain prepared for all sorts of unanticipated situations – including those moments of joy that present themselves if only we are flexible enough to allow them to unfold and proactive enough to tuck away their sweet memories for those hard days that also will come.  Carefully, slowly, we sweep away the negatives – not through denial but through choice – and prepare the foundation of positives upon which he can build his life.

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.)

Great Expectations – A Sensory Birthday Extravaganza

We love a birthday boy with #FASDBy @FASD_Mum

It started about 3.00 pm on Christmas Day: “For my birthday, I want….”  Week by week, month by month, the birthday list kept growing a little longer and the anticipation grew more fevered.

Impulsivity is a part of his FASD.  Every time our son sees something cool, he wants it.  Very much.  He has learned over time that he can’t always have it at that moment.  This is progress.  And we learned long ago that Toys R Us is no place for this child (or possibly any child).  That too is progress (learned the hard way).  He isn’t very good at consistently remembering things, so that thing he HAD to have one day can be forgotten and it is standard practice for something to be added at the very last minute. This shifting and expanding present list is a harrowing minefield for us, as his disappointment can be of epic proportions if he is expecting something that he does not get.  You may say, “All kids are like that.”  But I am here to tell you for a child with the brain injury of Fetal Alcohol Syndrome, this is a deeper, more devastating kind of soul-destroying let-down that is hard to describe.

This year he approached his birthday with mixed feelings.  He wanted the presents (by the time he was done, the list would have bankrupted Branson), but he doesn’t want to grow older.  He knows what physical changes are on the other side of puberty and he really isn’t pleased.  “I don’t want to be 12.  I just want to be 10.”  Waxing philosophical about “time and tide” doesn’t help much for a child who still skips along in that wonderful place we all once knew where magic and make believe seep and flow into reality.

I used to think summer birthdays would be cool (I am a December baby and forever bitter at the liberties people used to take, like the friend who once gave me a pair of mittens and said left one was for my birthday and the right was for Christmas.)  But for our son, having his birthday during the same week that school closes is like some form of psychological torture.  He can barely cope with the end-of-the-school-year pressures and the coming holiday.  When you add on top of that all of the hopes, dreams, expectations of his birthday, it’s enough to make anyone’s head explode.  Yes, we have had a rough ride of it around here for the past few weeks.

We also then had to decide logistics.  Should we plan a big party and invite all those kids in his class who did not invite him to their parties all year long?  We thought we would avoid that, and several months ago we made a deal that he and one of his close friends could go to the Summertime Ball, and that would take the place of a pool party like we had last year.  Except, that concert was in early June, and our guy has trouble linking something that took place so long ago with the here and now.  So of course we had to celebrate on The Day.  We had to plan things at the same time that stress levels were heightened in our house.

The night before his birthday tested our marriage in ways big and small.  Cleverly, we had decided to wait until he was asleep (which didn’t happen until after 9pm) to start to wrap things and to set up those electronics that needed special attention.  Some of you may remember that he broke his phone months ago, on the “Worst Day Ever.”  We had insurance on the phone, and it was replaced quickly though we never told him.  We decided to wait until his birthday to give it to him, thinking that handling the social pressures of a phone during the school year was not helping him.  In retrospect, it was not our best move ever to not even try to turn on the phone when we got it months ago, as we discovered at 11.00 pm that they had given us the wrong one and the phone was locked.  Oops.  That one went back on the shelf.

You also may have noticed that he broke his tablet last week, when in frustration he banged it on the floor because the volume would not go loud enough.  Normally we would not have replaced this so quickly, but we are heading on family holiday soon, and it is for our own survival.  But our attempts to set it up on the night before led to near toxic levels of parental frustration.  We didn’t get to sleep until very late.  The pressures of hoping he would enjoy the day were great.  We face each Christmas and birthday with a certain level of dread, as we know we can never match the vision he builds up in his head.

He was happy enough on the morning.  He woke up at 6 am and managed to wait til 6.30 for his dad to wake up (we didn’t even dream of waking his teenage older brother this early).  The birthday boy luckily forgot (for now) the very many things he said he wanted.  He had not yet realized that we failed to install the web browser on the tablet, and did not yet realize that it could not play music.  It only took him an hour to ask, “Mummy, why did I get a phone case when I don’t have a telephone?”  Oops.  Guess who forgot that was in the stack of presents?  We explained in vague terms we would see about getting a phone and that if we did he would be prepared.

He went to school happily enough, having convinced himself that one of his friends was going to give him a pair of Heelys.  He managed to come home from school in a decent mood (despite the absence of Heelys).  We had a few hours to prepare for the guests coming.  He was beside himself.  In retrospect, he should have been out of the house during the preparations.

Our sensory-seeking guy has been addicted to the “challenges” on the Seven Super Girls You Tube channel.  Over recent weeks and months it has not been uncommon to find cracked eggs in the bathtub, odd mixtures of baking soda and flour in our coolers, and evidence of other disturbing “pranks” with food hidden here and there throughout the house and garden.

So we decided to do something we KNEW he would enjoy.  With his input, we drew on an idea we had heard from a US relative about a “No-Manners Birthday Party.”  We invited family members and just one of his younger friends who is always up for some fun.

I can honestly say this was the most fun we as a family have had in ages.

Here is what we did:

12th Birthday Challenges

Rules:  There are no manners allowed. Hands-free eating is encouraged.  Personalised spit cups will be provided.  Lots of paper towels will be on hand.  All guests will be hosed off at the end of the festivities.

  1. Eat it or wear it – Everyone picks a number – you either eat 1 tablespoon of that food or wear it. If you eat it, the person on your left wears it. (Foods included a mixture of savory and sweet: spam, jelly, hot chocolate mix, mayonnaise, liver, ham, ketchup, baby food, pea & ham soup, etc.)
  1. Whipped cream contest – We put a few sweets on paper plates and covered it with whipped cream. Without hands, who can find the most candy at the bottom?
  1. Cheerio challenge – who can get the most cheerios stuck to their face? We all picked numbers and had various sticky substances like honey, maple syrup, raspberry coulis, etc. [Hint – you might want to skip raita – I can say from personal experience raita up the nose is not a good thing]
  1. Egg challenge – Everyone picks an egg without touching them. On the count of 5, crack it on your head to see if it is hard-boiled or not.
  1. Flicking corn plastic spoon challenge – who can make them go furthest? (my niece suggested beans, that might have been better as the corn flew way too far/fast and being frozen it was potentially deadly…)
  2. No label tin can challenge – Everyone picks a number and eat 1 tablespoon of what is inside the can with that same number. [We had a mix – canned mac and cheese, gooseberries, prunes, coconut milk, chicken soup, etc. It’s best to avoid the haggis if you can, our niece learned the hard way!]

[We missed the blow milk bubbles contest as we had no straws, and the “shake the can, watch it explode, and then drink it” soda burping contest was postponed since even the kids were grossed out and needed hosing down…We avoided anything with mustard, as that stings the eyes.]

I wish you could have seen over the course of the party how much joy we all had.  Nearly all the adults participated, along with the kids (even The Auntie who was initially leery of losing control over what would might be poured upon her).  As we left our inhibitions behind, we allowed ourselves to give over to a different sensory experience – the sticky, gooey, yucky, smelly, sweet delight of a kid’s world.  We planted our faces in whipped cream, we made sure to rub the jelly into each other’s hair, we forced ourselves to see and smell and touch and taste food in various forms.  It was silly and manic and just plain fun.

We had discussed our plans for this party the day before with a specialist therapist who has been working with our family.  He smiled a huge smile when we told him about this.  He knows how many struggles we have been having lately.  He said it was great that we are “sanctioning” messy play like this, validating our son’s interests, but with boundaries.  He suggested we plan on summer days a time each day or each week when messy play is allowed, with the clear proviso that when it’s done, it’s done.

So he had more “challenges” than even our son could have imagined.  He laughed and was allowed to be the silly, sweet and impish child that he still is, even at 12 (the emotional age of many kids with FASD is often half their chronological age).  Afterwards, we sang a joyful happy birthday and he blew out candles on the strawberry-filled sponge cake his grandmother had made.  This was a no-frills party, with paper plates and plastic spoons (the better for flinging corn).  Everyone had worn old clothes.  For food, we popped some store-bought pizzas in the oven for dinner.  We would not win any party-planners-of-the-year awards for this party, but who cares?

Our son declared this the “Best Birthday Ever!”*  His young friend said it was the “freakiest, weirdest but most fun party” she has ever been to.  You could see the years melt away from the adult’s faces as the events unfolded.

We had entered our son’s world, and finally understood that it is pretty darn fun to feed your senses in the silly and “uncontrolled” ways he has been doing lately.  It was remarkably fun to smoosh my face into a plate full of whipped cream.  I couldn’t catch any of the candy below because I was laughing too hard.  As we all let go that little bit, we all understand him a little better.  We discovered his world has some hidden joys in it that we have long since forgotten about as we have grown older and too serious.

We shared this party game list with other friends via social media.  The feedback has been great – others are planning to do this with their neurotypical kids too.

We are not out of the woods yet, there is a long summer ahead of us.  As I have been typing this, our guy has hinted more than a few times that he wants to try out that cola gelli-baf that he got for his birthday.  I suspect he may be up there at this moment, filling the bath…

And there it is, I just heard from the bath the first “For Christmas, in December, I want…”

———-

[*Note: they are all always “the best birthday ever” but this one was especially good.]

The Coming Summer Holidays Cause Anxiety For Our Son With FASD

We love a child with #FASD-7By @FASD_Mum

“Mummy, I can’t stop my body.”

In that gutted pause that comes after a loss of control, our 11-year old son found the words to tell me his truth.

“It doesn’t work right.  I want a potion to give me superpowers.”

This was after I prised from him the tablet clutched to his chest and saw that the screen was shattered.  He had pounded it in frustration because he could not make the volume go loud enough.  Instantly remorseful, he had been sitting there in dread, trying to problem-solve.  “There’s a place on the High Street with a sign that says ‘tablet repairs’ Mummy. They can fix it.”

We have educated ourselves enough about FASD to know yelling and punishment are the last things that would help him in this moment to learn the lessons he still needs to learn.  I was tired, defeated, but my child needed the best of me.  “I know it’s hard for you when you are frustrated.  It won’t always be like this.  When you get a bit older you will be better at controlling your frustration. I love you.”

Trying to think of ways to get to ‘yes’ before this spiraled into a full meltdown:  “You are frustrated aren’t you?”  Nods.  I moved the tablet out of arms reach, lest it become a projectile.  “It’s been hard lately, hasn’t it?”  More nods.  We moved to the couch.  He was curled up into himself, while wanting me to scratch his legs, rub his feet.

“You’ve been sad lately, haven’t you?”  That’s when the tear appeared in the corner of his eye.  The tear that made me choke back my own sadness. These silent tears are rare and heart-wrenching.  They speak volumes more than the more common full-on screaming tirades.  This poor child is trying so hard.  The end of the school year is too much for our son.  July has never been a good time in our house.

Every bake sale, non-uniform day, sponsored walk, community outreach activity…every special assembly, film day, school fete, disco and concert triggers anxiety over the uncertainty of expectations and timing.  For our son, it leads to strings of negative or oppositional instincts that can leave us all bewildered, shell-shocked, and trying to figure out how to reapply doors to hinges, literally.

For all the positive “you’ve tried hards” there is no sugar-coating the reality that end-of-year reports lead to disappointment and confusion.  A little more air escapes from his balloon just as he is trying to wrap his head around the fact that he will have new teachers and new subjects in the autumn.

In every conceivable way that he can, he has told us over and over again in recent weeks that he is on overload.  He has refused to go to school, to beloved extra-curricular events.  He tells us he is tired, his tummy hurts.  He is having digestive problems.  He tells us again and again he just wants to stay home.  He regresses.   He gets caught in the loop of perseverative behaviours – playing for hours with water in our garden, sneaking all the baking soda and baking powder and whisks to make potions – until something throws him over the edge into a meltdown.  If we try to redirect, he melts down sooner.  He wants to have independence, to determine what he does.  But it almost always ends with something that didn’t go just as he wanted it to.  And then we have blast off.

So we chat with the doctor.  We discuss re-jigging medicines again.  Brainstorm about possible other referrals.  The team around this child are growing concerned.  We can see it in their eyes.  We know they are looking at us with deepening worry.  Our veneer is scratched and frayed.  We can’t even pretend any longer.  We all know puberty is crashing down our our not-so-little guy.  We need to deal with his anxieties, give him the skills to be able to withstand these many pressures he feels.  We need to find ways to buoy him up when he feels like he is getting smashed by wave after wave of intimidating situations.

A psychiatric referral.  Tests to see if he has some sort of infection, to see if he needs growth hormone since he has gained no weight in more than six months while finally growing a bit taller.  X-rays scheduled to see if there is anything we can do to make the thumb on his right hand work (FASD affects more than the brain, he also has some fused vertebrae).

Each new step forward requires even more logistical juggling.  It’s welcome, but it’s more, always more, pressing down on us all.  I vented to my husband, maybe cruelly in the middle of a moment, “Prepare yourself.  It’s going to get worse, a hundred times worse before this gets better.”  The look in his eyes made me think I had slapped him.  But the reality is, I don’t think that’s an exaggeration.  We somehow have got to get through these teenage years with our son’s self-esteem intact.  And it is going to be hard.  Hard for him.  Hard for us.  Hard for his brother.  Hard for those around us, watching, wanting to help but not knowing how.

Our son most certainly does not have a carefree childhood, if that even exists anymore.  For him, this summer will not be the end-of-year locker-slamming, running-toward-the-freedom release I once knew.  For him it is a time of anxiety and uncertainty: unstructured time is no gift to our youngest.

And of course, in our recent daily survival mode, we haven’t fully sorted the coming holiday.  So we add another thing to list that we beat ourselves up about.  Deer in headlights, we see the summer holiday bearing down on us and make frantic calls for summer camps, urgently fill out forms to register him with various special needs databases and not unsurprisingly find out way too late about deadlines missed.  More emails.  More calls.  Clutching at straws.  We find one day-camp that looks great, they even have a Special Needs Coordinator.  We gently raise the idea with him.  He didn’t say no.  We wonder if we are going to lose a lot of money if we sign him up and he then refuses to go.

And the cherry on the top?  The last day of school coincides with his birthday, which is an event to him on par with or exceeding Christmas. The disappointment will come when he does not get everything he has requested for months on end. (The list would bankrupt Richard Branson). This year we are going to use the day to satisfy his sensory curiosity.  We are going to have a ‘no-manners dinner’ – an idea stolen from my niece.  We are going to have an “eat it or wear it” challenge per his instructions.  We are going to try to make it messy and memorable and pray it is as fun as he thinks it will be – but we dread it, are prepared for it to all crash down.  We have learned with this son that we cannot be rainmakers.  No matter how delicious the food I cook, and how many times he has liked it before, I am always ready for the instantaneous rejection that I try ever so hard to not take personally.  Birthdays, holidays, we are always on-guard.  We know for him the mundane is the true gift.  Which doesn’t mean he doesn’t want more.  Much, much more.

“Mummy, I don’t want to be 12.  I want to be 10.”

This is a child who sees things changing, who feels the differences more the older he becomes.  We can’t change what will be.  All we can do is shower him with our love – unconditional even-when-you-break-electronics love.

So here we go, the last week of school before the break.  Of course England has decided to hit the upper 30s (90s in Fahrenheit) this week, making the school an oven and adding yet more sensory challenges.  After we spent 30+ minutes coaxing him and gently trying to ease him out the door despite his refusal, and successfully avoid a meltdown, we work out a deal where his TA will help him plan the shopping list for the no-manners dinner.  We gird ourselves for the ups and downs of this week, the week we know we will look back on with envy once we get into the heart of this coming summer madness.

Even if it is not the best-timed birthday, he does after all need a new tablet.  The new one will have a rugged cover and a free replacement warranty.  We do learn.  Slowly.  By the time he is grown up, we may just have figured things out.

 

Room Swap, Part One

RoomSwap1

By @FASD_Mum

At first, it didn’t really sink in.  But yes, the sliding door was open and yes, our son was indeed squirting the hose into our dining-room-that-is-also-a-study.  Like a freeze-frame segment on a sports program, the next moments seemed caught in slow motion.  We faced off.  I stared into his eyes.  He was absolutely fully energized.  No.  He was manic.  Uninhibited.  Unhinged.  This, this moment was a stand-off of epic proportions.  And there was not a moment to waste trying to sort out what the parenting advice for kids with FASD might say for this situation.  Instinct kicked in.  I looked down, there was a growing puddle of water on our hardwood floor.  Alice’s pool of tears somehow flashed through my mind (it is after all one of our son’s favorite parts of the story and he literally only recently returned from a Mad Hatter party).  I contemplated what was more important, throwing my body over the computers or getting that door shut somehow.  If I moved the wrong way and psyched him out, that hose might not have stayed aimed at the floor.  My brain was locked on one thought.  Not the books!

Moments before our eldest had alerted us in the most British of ways, encouraging us to bring towels into the dining room.  He is such a great kid.  He stays cool in almost every situation.  He understands his brother’s brain works differently.  He gets it, sometimes more than we do.  So, I popped my head into the room for a quick check, wondering if I needed a cloth towel or if a paper towel would do.  I was lazily remembering, as I glanced around the door, that had we used the last of the paper towels earlier when the bowl of yoghurt had been thrown down the stairs and onto all the winter coats that had been pulled off the coat rack.

Until I rounded the corner I really hadn’t caught up with the live action. While I was still staring at the hose spraying full force onto my dining room floor, my husband had gone through the kitchen door and went in for the tackle.  Positioning himself between the nozzle and the tap on the wall was a significant tactical move.  (Sometimes it’s helpful he has watched and played so much football over the years.)

Now that the hose seemed contained, I quickly opted for all of the cloth towels hanging in the bathroom and sent the eldest upstairs for more.  Within moments, miraculously, the youngest was being handed off to me, quite indignant because he now had mud all over him.  It’s not clear that the hose was relinquished voluntarily (it has since been detached and hidden away).

So, yes, we have been having a heck of a weekend.  We always knew we would.  But knowing it doesn’t make it any more pleasant.  We are moving our son’s room as part of a planned upgrade of furniture in various bedrooms and moving our home office into his old room.  He gets a much bigger room in the process, which he has been wanting for years.  We know in the end this will be worth it.  (We hope in the end this will be worth it.)

To do this, there are many steps (think of that kid’s game where you move the numbers in the square around to try to get them in order, and when you move one you end up having to move them all before the one number is where you want it to be).  It’s chaotic.  It’s messy.

And it’s hard – extremely hard, if not impossible – for a kid who has trouble wrapping his head around abstracts to envision The Plan.  We have tried to explain it.  But honestly, we barely have our own heads wrapped around it.  We have plunged into the deep end here.  Of course we know we should have done this more gently. (As if we needed raspberry yoghurt on the walls to underline this fact).  We know we should have mapped it all out for him, shown him pictures, diagrams.  We should not have scheduled this at the end of a school holiday while he was home to see it.  We had thought the party would help him, and he did have a great time.  We are so thankful for friends who invited him and looked after him knowing what a difficult day it was.  But in hindsight it probably was over stimulating, even if we needed the time to Get Some Things Done.  He should have eaten more even if he was refusing everything.  He should have had exercise even if he refused to go to gymnastics, doubled over, saying his tummy hurt from the one thing he did eat. He should have had a top up of his medication toward the end of the afternoon, even though it was getting late.

We know, we know, we know.  Even before water washed away the marbles under the bookcase, we knew.  We know.  But we barely have time to get this done.  Without going into all the gory details, sometimes there are external deadlines that we cannot change.  Sometimes we do, we really do need to move our little ones faster than they can be moved, faster than they should be moved, faster than we want to ask them to move.  Sometimes, there is just no choice.  Sometimes, Mum and Dad have to take short cuts.  And yes, sometimes Mum and Dad learn that taking shortcuts is a really, really bad idea, and they only really get that when the sixth Great Lake is found spreading out in their dining room.

I am pleased to have been reminded that even in the most extreme cases my husband and I can work as a team instinctively, not fighting about the plays when the stakes are high (though we often quibble about calls that are far less important).  I learned that I have indeed become adept at the Next Level of FASD parenting – my reactions are becoming more of the ‘neurobehavioral’ type rather than the traditional parenting type.  My instincts are changing.  I knew the most important thing was to get him to a quiet space, somewhere calm, away from his flood. That I needed to tell him quietly over and over that he was okay.  He would be okay, I would help him get the mud off.  I would sit with him.   I did say that was not a proper way to use the hose and so we would have to talk about that because he damaged things.  But honestly, I didn’t dwell on it.  It was done.  In fact that was what I kept saying most of all.  It’s okay.  It’s over.  It’s done.  You’re okay.  We’re okay.

I was reminded of something important.  He is learning to tell me what he needs to come down from those moments.  (Can I just sit here Mummy? Can you just rub my feet Mummy?  I don’t want to talk now Mummy, OK?)  OK, pal.  And then our new ritual.  Look at me, pal, look at me (eyes flit up toward mine, for a second we really see each other and I know now we will be okay, the moment is truly past).  I love you.  I love me too.  You’re a good kid.  I’m a good kid.  Can I just stay here alone Mummy?  I’m hungry.  Okay pal, I’ll get you some food.  Not the green grapes, the red ones.

And that was pretty much the end of that.

Except that here I am, posting this the Morning After.  Today, we have to switch his room for real.  Some reinforcements are coming, but we have to have most of it done while he is at school or tonight could be an instant replay (without the now-hidden hose).  We will see how the actual swap goes.  I’ll provide an update for those following the Room Swap Ordeal.  Stay tuned.