A Dream to Help Me Cope With Anything

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By SB_FASD

We went out the other night to a relaxed screening of “Mamma Mia 2: Here We Go Again”. It was in a little arts centre in our town. The evening was co-sponsored by Guideposts, a regional organisation that works toward “a society where all people are valued and have equality of opportunity.”

Our 14-year old met a friend there from our local “FASD Club” (this is what the kids call their get-togethers while we parents drink coffee and chat in the local support group that we started after our son’s diagnosis). She also goes to his specialist school. My husband and I enjoyed the chance to spend a bit of time talking with her mum and some good friends who help run the arts centre.

We were welcomed as we entered by another friend of the family, a young autistic adult who was the most relaxed we have ever seen him. He introduced us to one of his friends, an older adult with additional needs.

As the sing-a-long show progressed, some of the young people got up and danced. Our son and his friend chowed their way through a cup full of sweets, popcorn and chicken and chips from a local shop. They were laughing and giggling, paying half-attention to the movie and the other half to each other. It was sweet.

I loved one of the songs:

“I have a dream, a song to sing
To help me cope with anything
If you see the wonder of a fairy tale
You can take the future even if you fail…”

“I have a dream, a fantasy
To help me through reality
And my destination makes it worth the while
Pushing through the darkness still another mile”

At 8:00 our son kind of suddenly showed me his phone and said he was tired, that he wanted to go home. To be fair, he had been in bed before we went out at 6:30 (he often goes to bed early, I think because he uses up so much mental energy in a day). Part of the negotiation in agreeing to go out was that if he told us he needed to go home, we would.

We did.

Even though the movie was just hitting the best parts, even though my husband and I both were enjoying the social aspect of being out among friends, we left. We congratulated our son on telling us he was ready to leave. We didn’t feel guilty, we were for once in an environment where others understood that we needed to head out. No questions asked. As soon as we got home, our son got into bed, turned off the lights, blasted his music and entered into his pre-sleep zone. Happy.

Once upon a time I was scared for our suggestible son to be around others with communication difficulties. When he was little, the one person he had most problems with was a child who was nearly non-verbal at an after-school club. He simply could not understand why she could not speak in a way he understood. It escalated him. She used only strong language and he mimicked it. He was used to others over-compensating for his own lack of communication skills. He couldn’t interact with her in any kind of positive way. We thought this would be what would happen if he went to a specialist school. He has always been very verbal, even if his understanding often lags behind the words.

But in reality, what happened after we moved him to a specialist school was that his whole being relaxed. This also coincided with – at the suggestion of the school and other professionals involved – giving him more freedom to dress as he likes and to let his hair grow long, acknowledging his gender non-conformity. Our son who was anxious and misunderstood for most of his life eventually, after an adjustment period, lost all those pressures to conform that had been guiding his every day. And those challenging behaviours that grew out of self-preservation started to melt away as his self-confidence grew.

Last Friday night was a vividly wonderful example of the positive ways our creating space for and opening up to the world about our son’s uniqueness has brought him and us joy and support.

There, in that room, was a beautiful future, a vision of life surrounded by friends and supportive people. The laughter and smiles on our son’s face as he was interacting with his friend filled my soul with hope. Seeing that he had role models of adults like him in that room, knowing that there were support people nearby and hopefully would be when in some very distant day that I am no longer here for him, that was exactly what I needed to see. Knowing that some of the adults in the room – community leaders – understand FASD because we have over the years given them the information that they need was also gratifying. The night was good for me too.

Many parents of children with FASD feel fear for the future. I realised at some point a while ago that my fear of his vulnerability was driving too much of his life. I had to stand down. My hypervigilance wasn’t helping. It’s a work in progress, but as he has accessed more support and as we as a family have learned more about appropriate strategies things have become easier. Much easier, if not ‘easy.’

Someone said it simply, “He is growing up.”

His is not the same trajectory other kids might typically take. But once we let go of the way society defines our son’s stages and ages, we were able to see just how little that matters.

He is relatively happy.

He is growing.

He is becoming better able to express his needs and to advocate for himself with words not actions.

He is learning to control his impulses.

He is feeling more secure, less anxious.

He has friends at school who are like him so he isn’t in a constant state of confusion, trying to understand social situations that were way above his head.

He has other friends locally who know about his FASD, whose parents know about his FASD and who also know about and celebrate his considerable strengths.

He has compassion. He is strong. He knows love.

As a mum, I wish my fear had not kept me focused for so many years on trying to help him ‘fit in’ rather than putting my energies sooner into finding him places where he could ‘be’.

If you could have seen that singing, dancing room full of happy young people and adults you too would have felt a sense of great hope.

For all those families in the midst of hard times, please don’t give up on the hope.

 

Gender Identity, FASD and Parenting in Uncharted Waters

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By SB_FASD

What can you say to a bright soul who just simply ‘is’ – beautifully, wonderfully ‘is’ despite being pressured by the world every day in 10,000 ways to conform, to fit in, to adapt? What can you say to a child who doesn’t see the boundaries others hold dear and whose perspective is governed by a strong and vibrant vision of what is right for them?

What do you say to a toddler who puts pyjama bottoms on his head for ‘hair’? Who models himself after a long list of female performers from Cher, to Hannah Montana (but most definitely NOT Miley Cyrus), to Sophie in Mamma Mia, to the ever-charming Miranda Sings? What do you say to a child who for years yearned for a wig, who made anything he could find into a headdress that would have hair hanging down his face, who asked for night caps that he pretended were wigs, who asked you to crochet fake wigs, who would cry and sometimes rage when he could not go out looking like he wanted to look? What would you say to the kid who in every charity shop you went into headed straight for the skirts, seeking the ones that flow and twirl, preferably pink and possibly sparkly? For years and years. This didn’t just crop up. It’s been constant and steady.

We didn’t get it. We redirected. We had a stock of ‘dress up’ clothes in the house for performing. But still the displeasure and unhappiness and sometimes meltdowns as we were leaving the house – the sneaking ‘hair’ into school bags, the wearing sparkly clothes under more boring clothes.

We were scared. Our son has a brain-based disability. He has a Foetal Alcohol Spectrum Disorder (though we didn’t know that until he was 10). He is at risk out there in the world. We worried he would be simply too vulnerable if we allowed him out of the house dressed the way he wanted to dress.

And then in the post-Brexit-vote days a young gay man was brutally attacked in our town by six people. Yes, we were reminded we have a reason to be scared, to want to protect our son.

But over time we realised that the best protection we could give him is a positive self-image. My mom used to teach me to cross roads confidently and to “smile like you own the world.” “If you hesitate or look like you might run off in a different direction,” she said, “that’s when you get run over.” We lifted the protective dome. Our son at nearly 14 now walks through town dressed in outfits he chooses. Because of his needs he’s never alone – we are always there by his side, staring down anyone who chooses to give ‘the look.’

The mainstream discussions about gender fluidity, gender diversity, trans issues (whatever words are the right ones to use, I am still not sure) seem to not have a place for a kid like our son. We see some really insightful and courageous young people pushing forward their rights to be who they are – these young trans leaders are bright lights in a world that is all too grim.

I am thinking now of a whole forgotten group of others who struggle doubly – people who are gender non-conforming who can’t really understand in what way they are different let alone find words to describe how they feel. Kids who due to the way their brains are wired simply can’t comprehend why people have a problem with them, who don’t understand the sexual or social connotations that others might be tossing their way. Professionals tell us this is in fact a protective factor for the gender non-conforming young person with an intellectual disability. But they can’t really know the desperation of wanting to protect your child – the impact of parental hyper-vigilance on your health and the health of your relationship with your child.

Experts believe that the alcohol that flooded our child’s system while he was in the womb likely impacted parts of his brain that influence hormones and gender identity and the way he understands these things. FASD is itself very under-studied and this aspect is even less so. We are out there in uncharted territory. (We have started a closed Facebook support group on FASD and Gender Identity to try to fill this gap.)

But to the greater world, as a parent in this unknown space you might as well be from Mars. It’s a double stigma. It holds you back. You’re already judged as a special needs parent (someone recently said to me “IF FASD exists…”) and on top of all that denial, people project onto you their own hang-ups about issues related to gender. You try to sweep away all the criticism before it comes. You don’t post pictures of that outfit or an angle that might show just how long his hair has grown. Not because you are ashamed, but because you really don’t have time or mental space for other peoples’ baggage. Your every moment as a special needs parent is spent trying to keep your own home in balance. You’re exhausted. And muddling through. Doing the best you know how to do in this land far, far beyond the traditional rule books.

Let’s face it. The lingo and even some of the politics of the LGBTQ+ community are intimidating. You don’t want to get it wrong. It’s too important. There is no way in the world your little one can begin to access and comprehend the nuances represented by these different terms. No way. At least not yet and not likely before puberty comes through like Miley’s wrecking ball. Just the concept of possibly using different pronouns would be nearly impossible at this stage for your little one to understand. The impact would be impossible for him to gauge since those with FASD have challenges linking cause and effect.

You dwell on issues related to informed consent. It’s a minefield. You have a child whose emotional and social age is half their developmental age. You learn about theory of mind and discover that the reason why your child has a remarkable ability to be who they are is that they are not developmentally able to fully understand that different people experience the world different than they do. You learn from experts that your teenager does not have the same concept of what it means to be ‘a boy’ or ‘a girl’ that others have. You start to worry that your child’s physical clock is ticking much faster than their social clock.

Puberty hits and your kid with the angelic voice literally stops singing because his voice cracks. Your heart breaks.

You are asked by a leading psychologist, “Who’s got the problem?” He’s saying to you that your child is confident and comfortable with his gender non-conformity. He shows you pictures your child has drawn with happy faces and love hearts. Your little one seems happy in himself. That’s what you want as a parent. You hope those smiles survive when facial hair grows. You desperately wish that voice will sing again and you’re simply not yet sure it will.

People think it’s the parents and carers pushing their own ‘agenda’ onto their child. They tell you what they’d do. (Save your breath, if it was as easy as cutting his hair, we’d have done it.) Anyone who knows me knows I am anti-lipstick, anti-heels, anti-sparkle (though I have to admit my repulsion for sparkles has weakened considerably in face of the onslaught). This is NOT me pushing an agenda. But by gosh if I have to, I WILL spend hours watching YouTube videos of various hairstyles and help practice them on the styling heads we now have under our roof – because the thing is, a child with FASD learns in unusual ways. A lot of it is multisensory. If the child has a particular interest, it really helps to develop that, to use it as a bridge. To connect. It’s doubly hard to know at what point this is an obsession versus something deeper. For years we thought the hair and skirts were about sensory needs. Most likely it’s an unknowable combination of factors.

Honestly, I have no idea where all of this is heading. We are pushing no one anywhere. We would rather opt on the side of allowing our child informed consent, even if that means moving conservatively. We understand that perhaps might be compounding anxiety and limiting future options unnecessarily.

But then we hear, now that he’s in a supportive specialist school where staff have specific Stonewall training in these issues, that our child is a leader (their term). That he is helping other children in being more comfortable in their gender expression. That they have never had a student with gender identity issues as comfortable with themselves as our little one is. We get comments on school reports like, “he has managed to express his colourful personality” and “he is not at all afraid of thinking outside of the box.” We feel relief that his protective shield is growing stronger.

Just last week his school went to see “Everyone’s Talking About Jamie.” We were nervous about letting our son go on this trip since the theme deals with a teen who dresses in drag – possibilities we have not discussed yet with our son. At the end of the day, the kids came off that bus in a group. Our long haired, bright eyed, beautiful son was in the middle of them. They were elated. They were all together. And he blasted the theme music that night as he fell asleep. He was content.

There is everything to gain from being open to our little one’s magnificence. And by “everything” I mean keeping that sparkle alive in his eyes. That is the goal. Keeping our guy alive and full of life. His life. His very own unique and awesome life.



For information or support:

Stonewall has some great resources, including for schools
Gendered intelligence 
Mermaids
FASD and Gender Identity Facebook Support Group (you will be asked to fill out some questions before becoming a member of the closed group)

 

 

 

Small Change Adds Up

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By MB_FASD

Things can only get better. Is that right? Is that how it works for families with kids with FASD?

Well no. Of course not. Things are quite often decidedly mixed. But they can change for the better. Nothing is static in life, and with appropriate supports and better understanding of the child, the condition and how to help, things can improve.

Take our son. He’s thirteen now. A year ago at this time, he was in crisis. Life was too much for him. He was refusing school a lot of the time, desperately upset when he did go. He was having daily, twice daily, meltdowns. The stresses on him were intolerable.

So, a year on, how is he managing life? How are we managing? Things are a lot better. We couldn’t change him, so we changed his environment. Also, he’s changing. While he’s socially delayed, he is growing up as all kids do. And that makes a difference. Here’s some examples from this week.

One of the simplest signs both of a growing maturity and of a calmer environment is in our mornings. Previously, we had to be with our son all the time. We had to help him occupy himself almost every minute of the day. Leaving him alone would lead to problems. He couldn’t self-regulate and he couldn’t keep his mind calm enough to do activities on his own. Now it’s much, much easier. Albeit with the help of games on the phone, but also with creative film-making and vlogging, our son keeps himself busy, often for hours on end. Since we both work from home much of the time, this is a positive benefit, and it’s a good sign of how his world is changing for the better.

Another positive development has come through school. We’ve discussed before what a huge change the move to special school was. How it relieved the pressure on our son, and how they let him thrive through the most wonderful theatre and music programmes. That’s all true, and he goes out to his taxi without protest every morning, a far cry from the terrible days of a year ago, even if he wishes for the small netbook his mainstream school let him use in lessons, and moans about “too much writing”. He is still happy enough to go, and is clearly thriving under the care of a fantastic, dedicated and talented staff.

Our little man and his Mum were in a shop this week looking for a drink and some sweets. His mum let him go in alone with £5.00 while she waited outside with the dog.  He looked at the price of the slushy he wanted, and the bag of sweets and worked out that they cost. He then worked out how much change he would have, and before he purchased them he asked Mum if this was ok. To our knowledge, he hasn’t put all this together in this way before. He understands that you have to pay for things in shops, and has sometimes been able to work out if he has enough money, but has never proactively done the maths himself, weighed his options so calmly and asked before spending. That is real progress.

He is learning and applying his lessons to life. It’s tied to school. They have a tuck shop in morning break where the kids are encouraged to bring change and make small purchases. Apparently, it’s succeeding. It feeds in to success in his life skills homework book. He was able to tick off that task as successfully done. Homework that makes him feel better about himself, rather than driving him to tears and despair. That is a novelty. And while its harder than the canteen at his old school (there he paid electronically by fingerprint with no concept of the cost of items), it’s better for him in the long run, as it’s teaching him to cope in real life.

Another example.  This evening, he was partly dysregulated. That’s a word he knows and he sometimes understands that he needs to start using calming strategies or go to a safe space before he has a meltdown. I was offering swimming, but he didn’t want to go. He stated that quite forcefully. Then he started building a marble run. All the while muttering repeated phrases under his breath, most of them bad language. Over and over again. Often a sign a meltdown is coming. And often the plastic marble run pieces will fly as his frustration boils over. I was really worried, but I didn’t want to push him out the door. This usually ends badly. But not tonight. He focused in, and he built two big marble runs. He used a favourite toy to calm himself, instead of letting his feelings overwhelm him. Then he proudly demonstrated his efforts to his Mum and me. That’s real progress. In the past either I would have dragged him swimming to re-regulate through physical activity (still an important option), or he would have had a full meltdown. Now, he’s starting to understand himself. And we let him make the choice. We are learning too.

Two days ago we had to go to Great Ormond Street for a gruelling round of three pre-op appointments for an upcoming hand surgery. A nasty rainstorm had every anxiety ramped up in the drive to the train station.  Before getting on the train we purchased some “lava putty” at a toy shop, and during the whole trip he used this very consciously as a calming mechanism. “I am good with sensory toys,” he said.  And he was.  A few years ago there is no way we would have made it through that day.

None of this means life is perfect. Meltdowns happen. Earlier in this day there were indeed parts of a marble run broken, but we minimised the scene and quickly moved on – to the point that a short time later he was helping to tidy up the mess. The challenges are all very real. We can’t relax our guard too much or things do fly.  We have to work to involve him in family activities, and part of the success in less stress lies in the things we don’t even try to do anymore. We had to let go of expectations. FASD is very real and it affects him all of every day. It affects us too.

But, things are getting better. His world is slowly, slowly changing. We can perhaps start to think about a transition to adulthood that can be managed without devastating trauma. We’ll see. There’s a long, long way to go. He’s growing up, and his world is a little brighter for it – and for the changes we have made in our world to help him, and us, get through the day.