Food in an FASD Family

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By SB_FASD

Once upon a time, I imagined growing up and having a happy, bouncing home full of people who would love to sit around a table and share elbow-to-elbow in overflowing platters full of fragrant, mouth-wateringly good and abundant food.  In my mind’s eye, we’d help each other prepare the food, dip our spoons in and ‘taste test’ whatever was bubbling away on the stove, laughing, teasing, and reveling in food of all sorts, just as I did in some of the most wonderful memories of my youth.  We’d tease and cajole each other, dig in for seconds, and all help tidy up after the meal was over.  That was my dream.

HaHaHaHaHaHaHa.

As if.

Needless to say, that is NOT the life we lead today in the home I cherish despite its complete difference from the world I knew as a child.

It took years and years for me to ‘let it go.’  Years and years of slowly beginning to understand just how deep FASD reaches into my son’s very being, giving him a different window on this world.  Years and years of hanging onto that belief that one day we would somehow slide into my (previous picture of) ‘normality.’

Prenatal exposure to alcohol can damage the way a person’s brain develops. When it occurs, those intricate and as yet-to-be-fully understood neural connections are compromised, scrambled, damaged. Signals don’t go where they should go. No one really know exactly how or why, but they do know a person with FASD can have some very serious sensory issues, the damage can affect development of other organs and systems – throwing the whole body into imbalance. One part of this complex picture is that it can leave a person with FASD with a very complicated relationship with food. These issues can be compounded if there also was early trauma.

Feeding our youngest was never going to be easy – he was deprived of food early on. He had rickets when we adopted him. He had to learn at 16 months how to eat until he was full, not until his body literally threw it up (as infants learn much, much earlier). Despite his troubles, he is not even so very severely affected – we know of other children with feeding tubes, adults who have been hospitalized because of imbalances in their systems. Despite a slow start, our son is growing, doing okay-ish on the growth charts. Yet, these challenges, minor as they are in the FASD scheme of things, altered the way our entire family interacts with food, changing the way we celebrate holidays and altering daily routines to the point where our house no longer resembles the life I thought I would lead. I am not ‘blaming’ anyone here, just describing a new reality that we have accepted.

I know there are those out there who will be reading this and object to the idea that a family’s routines can be so altered. I know there are families who have managed nevertheless to convene all around a table multiple times each day.  I know it’s possible and I take my hat off to anyone who manages that. But it is not life in our household. Not now anyway.  When our guy was younger we kind of plowed on with it. We could force the issue a bit more. But as he has become more independent and more vocal about exactly what he can and cannot stomach, we have chosen not to have conflict around food in our house.  Well, we try not to have conflict around food.  But, of course, we do.

I wish we had started from the premise that there is ‘always a reason’ for certain behaviours. It might have saved us years of wrangling over food issues. I have said it before – our son has always shown us what he needs, we have just been too slow to pick up on what he is communicating to us. Even now when he is increasingly speaking his truth, we still sometimes don’t really ‘hear’ what he’s saying.

“My body can’t handle it.” As it turns out, this is true, though it took years to diagnose his cows’ milk protein allergy and more years to understand how this might affect so many of his digestive issues. Anything to do with burping, reflux, toileting, soiling, sore tummies or gas all cause great distress for someone with sensory issues. Imagine being a toddler and being unable to explain this. It’s hard enough for a 13-year old. We still don’t know if we know the whole picture, but we do know this one allergy can affect him profoundly.

“It smells.” We have come to realise that our son’s sense of smell is highly developed. Much of taste has to do with smell, so if something doesn’t smell right or good to him, there is no way it’s going down. What smells ‘good’ to him might be completely different than we might think through our more traditional programming. We have made this into a positive – we praise his sense of smell.

“It’s disgusting.” An adult with FASD in an online support group once vividly described his visceral reaction to certain foods or textures. This is graphic. He said when he is being forced to eat something that his body is rejecting it is like being forced to chew and swallow poo. He said there is no rhyme or reason to it. He can’t explain why. It just is. This is important to hear from an adult perspective because we tend to force our children even when they say such things. We have learned that there is no arguing when our son is rejecting food due to a sensory issue.  It also took us a while to understand that he actually enjoys strong flavours – vinegar and mustard and pickled onions and other tastes a child normally avoids, while something like milk chocolate somehow disturbs him. His brain is wired differently.

“Your germs are on it now.” Our son is learning rules for handling food at school. To him use-by dates are gospel. A flame a bit too high on the stove spells danger. Everything to do with cooking and serving food has its ability to send his anxieties through the roof – from the sound and feel of knives and forks on ceramic plates to whether or not someone ‘breathed’ on his food can signal the end of a meal, even before he gets to the point of tasting it.  Lately he has his own tiny (cocktail) forks and spoons, his own plastic and melamine plates and bowls, his own plastic cups. If one of us uses something of his, he won’t use it again. If we touch his food, he won’t eat it. Sometimes.

“I’m not hungry.” He cannot read his body’s signals. We know this from occupational therapists’ assessments. He doesn’t feel sensations in the same way most of us do. On top of that, he has medication for ADHD that actually suppresses his appetite. If he’s not hungry, there is nothing we can do or say to change that. We have found feeding him unusual breakfasts (burgers or salmon) and planning later substantial ‘snacks’ (fish fingers) at bedtime can help ensure he gets the nutrients he needs. This is especially important as we have been unable to get him to take a multivitamin for a while now. We are picking our battles with pills.

His body and mind fixates on things – this is also directly related to how his brain works and maybe even his nutritional needs. He craves foods. He can go days on end where all he wants are avocados or pepperami or salmon or…. If he knows something is in the house that he is craving, it is impossible to divert his attention from it. But these things shift from day to day, making it very frustrating when we stock up on something that is ‘in’ one day only to have it rejected again for months. The situation is not bad enough to lock up cupboards (though we understand that some need to). We just accept that whatever is in the house he may eat. If we have candy, then we only have as much as we are willing for him to eat in one day.

He is a hands on guy. We love it when we cook together. For years “I Can Cook” videos and recipe books played a huge role in our lives. We used to play a ‘Disgusting Menu’ game we made up where we would choose three things that would make the most disgusting food we could think of and then all yell together “Ew! DISGUSTING!!!” We have games about food shopping and food preparation.  He loves looking through cookbooks – we have some from around the world. His specialist school has a goal to teach all their students about 10 meals they can cook by the time they leave school, and he is becoming more confident about fixing food for himself. I have a plan in my head to start introducing him to recipe and food list apps as a way to help prepare him for adulthood.

He is learning about his body – we have Usborne lift the flap books that show the progress of food through the body, we have watched over the years the “Magic Schoolbus” episodes that help kids understand their anatomy. He has studied books about the food pyramid and knows he should ‘eat 5’ every day. He has memorised “Oliver” and he has a bowl that says “Please sir, I want some more” on it, a chopping board with the music script from “Food Glorious Food.” But none of that helps at that point where he simply cannot put that particular food into his mouth at that particular moment on that particular day.

So, we have changed our expectations about socialising over food.  Our best successes are always when we have a range of foods that he is free to choose from – a ‘smorgasbord’ where we always have at least one or two things we know he will eat and then we don’t comment if he avoids other foods. When we are in restaurants (sensory hell for him with all their confusion, noise, smells, anxieties) he is allowed to be on a phone or tablet. We limit holiday sit-down meals and we give him a place he can go to when he wants to leave the table. We have spent our fair share of time eating pub roasts outside so he can swing on play equipment while we eat quickly. If family and friends come over, we often do pizza or BBQs rather than the type of meals I would like to prepare, but which take my full attention – attention I am unlikely to be able to give to the stove when visitors can peak anxieties in many other ways. We let him eat quietly in his room for most meals – it seems to let him relax into it more when he doesn’t have the other anxieties of (for example) trying to figure out how long he needs to endure sitting at the table while others scratch their forks on their plates.

These issues are real. Research supports this. As one small study said, “children with PAE [prenatal alcohol exposure] may be at risk for nutritional deficiencies, which are influenced by inappropriate food preferences, disordered eating patterns, medication use, and the stressful dynamics surrounding food preparation and mealtime.” (Interestingly, I googled and found this quote AFTER I had written this blog post! There are many other studies as well.)

For someone with FASD food can become a trigger point in so many ways. It’s not fair to let this be a battle ground when the person with FASD is clearly struggling. ‘Dig deeper into the why-s of it’ and ‘let it go’ are the two main bits of advice which have helped us re-develop our family’s relationship with food. And yes, we allow ourselves still to giggle over ‘disgusting menus.’

Keeping the laughter and joy about food means a lot to me. Readjusting our relationship with food as a family affected by FASD does demand a lot more patience and creativity than I sometimes feel able to bring to the table, though we will never give up trying.

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Trusting Joy

Blog TrustJoy2By SB_FASD

Our family doesn’t do ‘easy.’ At times when I am tired and worn down I might rail against this, but when you get right down to it I don’t really expect life to be any other way.

A week before Christmas we brought home a puppy, a nearly 5-month-old mutt rescued from Bulgaria. This followed the unexpected death of our beloved, gentle Christmas dog Noel. The empty space in the lower 12-inches of this house was too great for our son with FASD to bear. We all were sad. So we moved quickly. Our idea was to bring in a dog different enough from Noel to avoid constant comparisons.

Enter Joy. (Yes, remarkably that was her name.) She is a beautiful, sweet being who had a complicated beginning. As a friend of ours, Savanna Pietrantonio, insightfully said, “We get the dog we need, not the dog we want.”

At the last minute we had to bring our son with us to pick up Joy from the kennel. We were worried that if the dog was unsettled on the long ride home it might be traumatic. On the contrary, Joy was silent the whole ride home and for the first couple of days. Our son comforted her the whole way home. They have a special bond as a result.

But welcoming Joy was and is complex. For the first time in many years I was thrown back to the days when we first brought home our son who had spent the first sixteen months of his life in a Russian orphanage. The effects of early institutionalization were familiar in a deeply saddening and worrying way.  Our little one too had been silent, not making any voluntary noises. He had been unfamiliar with any but the most limited of sights, smells, sounds, tastes, textures. His basic needs had been met but his soul was uninspired, dormant. He was withdrawn into himself, not trusting the world could meet his needs. He would retract his arms and legs into a onesie and rock himself because no one else did. He too flinched if I made a sudden movement.

Joy had lived her first five months with other puppies in what looked like a 3×3 corner of a concrete room. She was fed and warm but not able to explore, to grow, to socialize with humans. We hadn’t fully appreciated the impact this would have on her. The first morning she was here she was terrified by a garbage truck and the sound of rumbling bins being dragged along the pavement. She also had tentatively crept up behind my husband who stepped back and accidently trod on her. She was not hurt but freaked. She spent that entire day on the dog bed not moving, not eating. I was fearful, reliving Noel’s last days as I hand-fed her food and worried if maybe my husband had hurt her back, scared she could not move. But she was just shut down, uncertain. Later she growled and snapped at my husband and our elder son. She wouldn’t go through doorways. When she eventually found her voice, she barked at every sound – the heating, the trees, footsteps on the stairs. These sudden and unpredictable outbursts of course affected our son with FASD. We became alarmed that perhaps this might not work. Our house isn’t easy – and the last thing we need in our mix is an unpredictable and scarred dog.

But then I started to notice little moments.

Our son with FASD was giving me hugs, encouraging me. He saw Joy was upset. He was analyzing how she was reacting to me and he told me I was doing a ‘good job.’ He understood that she needed reassurance. He kept his voice modulated, withdrew to his room when it was too much for him. He understood that Joy was experiencing new sounds and sights that were overwhelming her, just like sometimes happens to him. Even after she snapped (though interestingly never at him) he understood that sometimes he too lashes out when he is dysregulated. He forgave her. He was using his experience to explain her needs to us. He thinks Joy sees him as her Daddy. This is the first time I have ever heard our son see himself in a paternal role, a sign of how he is maturing. Proof that while Noel was all about comfort and security, this dog is going to help him in different ways, taking him and our family to the next level.

The rest of us are having to seriously reexamine what type of energy we are projecting. Joy had an instant negative reaction to our stress. For years we have talked about our need to keep a calm environment to cognitively support our son, but Joy is forcing us to take this awareness to a whole new level. She responds instantly to negativity, showing us physically that even when we think we might be modulating our energy, the stress is still too high, still has an impact. It makes me think of all the pressure we place on our son, even when we don’t realise we are doing so, relying on him to be the one to change, to conform. Joy is showing us we are not as calm and collected as we think we are-this is an incredibly timely reminder to help us help our son as he enters these teenage years.

Joy has removed the focus from our son with FASD and has allowed us all to have a third-party discussion about sensory issues and strategies that brings our family to a whole new level of awareness. Suddenly our youngest son is not the only one in the house with needs in this area. Changing the focus is freeing for him in ways I had not anticipated.

After one particularly hyper and alarming moment, I took Joy onto my lap and I started to massage her as I have learned to do with our youngest, providing deep pressure to help self-regulation. I was discussing with our son as I was doing it that this is the same thing that helps him sometimes, he could see it working from a different perspective. Joy relaxed fully, like butter in my arms. It was humbling and encouraging. That was when I believed we could overcome her issues. We know how to help a traumatized soul. We just need patience. I also realized this would take time. So, while I regretted this happened just before Christmas, I began to welcome the timing for the gift it was. Over the holiday we have had the time to give. And I needed to slow down anyway. The immediacy of this forced me to step into the now.

This year, we simplified our Christmas celebrations. We put up fewer decorations. Everything on the tree is non-breakable just in case. We mostly stayed home and limited who was coming to the house. Those who did come came with an explicit request to be gentle and calm. As a result, despite the added chaos of a new puppy in our mix, we have had one of the calmest and most successful holidays yet.

Due to her enthusiasm at smelling human food, Joy has even succeeded in getting our family eating once again around a table. Bonus!

As our friend Savanna Pietrantonio said, “Everyone can come together for this little being who didn’t choose to be born but was chosen.” As an adult with FASD who has a ground-breaking FASD service dog, the first of the kind in her area, she has offered us a consistent stream of insight and advice on how to integrate this puppy into our lives. She said Joy will help our son become self-aware. “I really have to watch my voice and reactions now so not to scare [my dog]. I’ve become really aware of myself being myself. That’s a good thing for [your son].” She helped me to see the lesson in this for me as well. I was receiving a wide range of advice from corners near and far. But I felt this dog should not be pushed too fast, that there was healing that needed to be done first. She said, “You know instinctively how to do this. All the people around you make you doubt yourself and work against you. Just like FASD!!!!! People assume dogs are like us with FASD. We must be disciplined and obey and use logic and not spoil them! I say meet the child or dog child’s needs and they will have no needs.”

Joy is settling down, learning how to trust our pack. We have come to accept that nips are not always bites and her growls might come from fear that is diminishing with decreased anxiety and security.

She stuns me at times with her nobility, her gentleness, her playfulness, her alertness. She is a bundle of energy, a hound whose senses are highly attuned. She likes to get wet and muddy. As we had hoped, she is so different from Noel that there is no comparison. Each of us is bonding with her in our own ways. It’s lovely.

The second time we let Joy into the garden, I witnessed something magnificent. Suddenly she overcame her fear of all the unknowns and let go. She ran for what I think was the first time in her life, bounding over low walls and steps. Soaring. She had found her legs. I felt like I had witnessed a birth. It was a freedom and a feeling she had never known. I hadn’t known I needed this dog too.

I was thrown back to the early days with our son who also had lived confined within walls all his early life. I remembered the first time he felt the wind on his face—he laughed with pure glee, blinking his eye lashes, completely enthralled. It took a while but he began to welcome and not fear those horizons that are wider than his early experiences led him to believe. To learn there can be hope beyond the walls that contain us.

This sums up the lessons of our FASD parenting journey. If we nurture our belief in what is good in this world and in those we love even through the dark times—maybe especially through the dark times—if we let go of expectations we can open our hearts and our lives to what’s new and different.

Going beyond our fears and trusting Joy is going to take us to the next level.

 

 

Slime, Enchantment and FASD

Blog Slime

By SB_FASD

Once upon a time, and twice a week since then, a little boy would make a mess.  Shampoo.  Toothpaste.  Bubble bath.  Washing up liquid. Laundry detergent.  Perfume.  Powder.  Spray deodorant. Mouthwash.  Flour.  Butter.  Bicarbonate of soda.  Food colouring.  Vanilla extract. Broth cubes.  Salt.  Corn flour.  Sugar.  Fabric softener.  Conditioner.  Bath gel.  Even – in a time long, long ago – some cleaning fluids.  Nothing was safe.

This little boy made messes big and small, smelly and sweet.  Sticky and staining.  Hidden and brazen.

For years his parents chastised and chided.  Hid things and redirected.  Monitored consumption and kept to the script of what we are supposed to do with such things.  Teaching, they thought, that it’s not good to waste, that we don’t play with food, less is better than a lot.

But still the messes continued.  In fact, one window may be forever fogged in the corners from some unknown combination that was once sprayed and congealed.

This little boy grew to be a googler.  He became adept at finding Kids Choice awards, and played over and over and over again the scenes where famous stars are covered in slime.  He found YouTube channels full of people doing challenges where they sit in bath tubs full of cheerios and jelly.

Maybe he had tried over the years to tell his parents where all of this was going.  If he did, his parents didn’t hear.  They just occasionally grew angry when the shampoo was gone, when the bath had to be rinsed yet again from whatever-mix-that-was-this-time.

Meanwhile his parents had been googling and learning themselves.  Doctors helped.  Diagnoses opened minds.  The parents began to see this through new eyes, and began to rethink his relentless ignoring of warning after warning.  They began to see he wasn’t being ‘naughty’ – they finally grasped the behavior as a symptom of a need that he could not express. But knowing that wasn’t enough.  They had to change their approach.  Create a different environment.

So they started to buy cheap items for sensory play: foaming soaps, oozy liquids, cheap whisks and plastic bowls.  To the consternation of some, they enabled the mess but fulfilled a need.

Meanwhile, the happier boy kept googling. He watched hundreds of videos.  He turned his attention to a single focus.  Slime.

It wasn’t pretty.  The house became filled with randomly found containers of soapy smelly stickiness.  But this time the parents didn’t fight it.  This time they planned fun trips to the store with the boy so he could pick the ingredients rather than help himself to Dad’s favourite shaving gel.  They googled to try to find UK replacements for Elmer’s Glue and Borax (the holy grail of slime making), knowing how frustrating and abstract this was for their son to understand that some ingredients were not to be had on these British Isles.

They set up some spill trays and gave smaller bowls to limit the quantities for experimentation.  They lined up saline solution and salt, cheap shampoo and hand soap.  And day after day after day, the boy tried.  And he tried.  And he tried.  He just couldn’t understand why it wasn’t working.  He wasn’t so keen to follow the recipes exactly, he insisted a dash of this or a bit more of that was what he needed.  But though it was not ‘successful,’ he was absorbing and learning using his senses.  He was focused.

The household was under a spell.  There were mixtures in the freezer, in the refrigerator, on the counter, and on window sills.  And still he googled and still he tried.  The boy was happiest when mum was sitting by him, watching the videos and listening to the fake American accent he adopted as he mimicked the kids on the videos.

Day after day.  Powder and flour clouds occasionally rose over the sticky concoctions.

Never did the parents say a negative about the mess this time.  They stayed close and helped clean.  They supported, not critiqued.

And then, after maybe 10,000 mixtures, there it was.

The boy made slime.

Good slime.  Slimy slime.  Goopy slime.  They kind of slime you need to put in a leak-proof container and bring to school to show people kind of slime.  The kind you ask mum to stand next to you, with her own little bowl and spoon, so you can show her your special recipe kind of slime.  And yea, though it was remarkably close to the one she was trying to show him weeks ago, it was so much better because the boy made it himself.

He had to learn this his way.  And low and behold, he did.

On this magical night when proper slime finally was created, as the mum was walking out of the room after the high fives and well-dones, she heard it.

The boy’s voice.  Quiet, clear, and confident.

“I AM a scientist!”

He said it to himself.  It wasn’t bravado.  It was fact.

The words hung there in the night.

And suddenly, the parents knew that all of it was worthwhile.  And they were pleased that though their patience had been tested again and again, this time, they knew they had helped their boy on a remarkable journey of self-discovery.

You might come yourself to this enchanted house.  You might still see the huge tray full of half-mixed concoctions. Yes, there are stains on carpets that are ignored, and you might rightly stare hard at the cups and spoons you are given which may or may not still have traces of the taste of glue clinging to them despite the parents’ best efforts.

But the family hopes that if you come through their doors you will see Progress.  This once dark and stormy house has become a happier, calmer place.  It’s far, far from Perfect Land, this much is certainly true.  But in SlimeVille there are pockets of joy and self-satisfaction.  There are bridges across Sensory and Cognitive Needs to Productive Lives.

And what was once a battle has been redrawn into a shared camaraderie, a past-time that opens doors for discussions between them rather than the flashpoint for shouts and frustrations.

The boy had been trying to say this for years.  Once again the parents were too slow to see what he was teaching them.

But they learned, and it helped.

 

 

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