Transitions and the D-word

Blog Transitions

By SB_FASD

Usually when we talk about transitions in supporting someone with FASD we talk about the little moments most people take for granted: the getting out of the house and into the car, the getting ready for bed after a busy a day. That’s because these moments can be ripe for escalation and chaos if they are not well prepared in advance. For a person with FASD, transition can trigger anxieties or they may have trouble switching cognitively from one task to another. They may have trouble estimating the time involved or they may simply be too on edge already to have another demand placed upon them. Anyone living in a family affected by FASD knows things can skyrocket quickly. A lack of impulse control can sometimes mean words and fists and heavy items can be flying when the person’s fight or flight instinct kicks in. Dysregulation might mean the entire seemingly simple moment of transition can explode. Moments can be fast and furious.

But this post is about another kind of transition. The big kind. The moving from one phase of life to another. Not unlike those micro transitions, there are so many ways these macro transitions can go haywire. As a parent/carer it’s intimidating and nervous-making.

No doubt this will not be the last post about this topic. But it’s the first about our little one transitioning into adulthood. This moment where we are now is known. As a family we’ve learned how to cope here in this stage. Suddenly I find myself wanting to hold onto to ‘now’ forever.

But as they say, time and tide wait for no one.

Two things happened this week that leave me thinking these thoughts. Our son and I went to see Little Mix at the O2 arena. And we visited a local college to prepare for the next phase of his schooling.

The Little Mix concert involved nearly a year long wait. The tickets went on sale before Christmas last year. That’s a lot of months in the life of someone with FASD – of any kid – but especially for a young person with FASD. For years he has been a die-hard Little Mix fan. His indelible mark on the mainstream secondary school he attended was winning his school’s talent competition as an incoming Year 7 student performing “Salute.” Even still, over the months of waiting for this concert we went through waves of him telling me he didn’t want to go because there would be too many people, it would be too noisy, it would be past his bedtime, and a whole string of other related anxieties. Just getting there on a multi-train journey was challenge enough.

We decided to really splurge and stay at a hotel connected to the 02. This was more for survival than luxury, since we had for some reason chosen tickets on Halloween and there was no way our guy could have handled public transportation through London at 11:00 pm on Halloween after the full-on sensory experience of the concert. It had been a couple of years since he had last seen a big show like this.

His expectations were high but his nerves were raw. We weren’t able to book the special needs seats for the show. So we went to the arena early. I was wearing a sunflower lanyard with an ID that shows he is officially registered with our local additional needs database. Even though there were only about 30 people ahead of us in the general queue, our guy was anxious, asking to leave, ready to miss the whole show.

Desperate and feeling intense parental pressure to somehow ensure this long-awaited night didn’t end with a big fizzle before it began, I showed the badge to someone who worked there. I asked, “Is there any way you can help us? My son has a disability and it’s too overwhelming for him to wait in this queue.”

And that’s when it happened. My son looked up at me, “Do I have a disability?”

In his 15-1/2 years of life, he had never heard me say that word. In every doctor’s visit, every SENCO meeting we have been adamant that our guy not hear phrases like this – we would insist that the professionals wait until he was out of the room before going into details. We would demand all discussion in front of our son was positively framed.

We were being led to another, shorter queue so my reply was quick. “Yes. It’s because of FASD. It makes it hard for you to cope with things like being in noisy places and standing in lines. There is another queue we can use.” Access to this other queue, a special elevator and a quieter holding area before we could get to our seats made the rest of the night possible. We weren’t gaming the system. He needed this. He had a right to be there.

But the ‘d-word’ hung there and over me all night. What had I done?

The night was a success in the end, even if I was on high alert for the zillion ways it could have unravelled. I wasn’t allowed to sing. I couldn’t tap my foot. He wore a pair of new ear defenders (“these are the same kind we have a school”) but was quite concerned about noise levels. We were able to avoid the after-concert crush by using a special walkway back to the hotel, so we were thankfully in bed 20 minutes after leaving the arena. We had an awesome next morning enjoying the hotel’s spa. The quite amazing ‘relaxation pool,’ steam room, sauna and glowing mini-mountain of crushed ice provided all the proprioceptive and sensory input anyone needed. This mum realised she needed this as much as the not-so-little guy.

I began to forgive myself.

The reality is that our son has rights as a person with a neurodevelopmental disability. And he is getting old enough now that he needs to learn those rights and how to self-advocate. He’s been doing more and more of this in school and at home. (“My brain can’t handle that” is his main phrase to tell us when he needs a break). But out there in the world, sometimes we need to use the buzzwords that others recognise.

We will of course revisit that conversation time and time again and discuss it in different ways and ensure he knows that the ‘d-word’ does not mean ‘less than’. But it is indeed time to help him self-advocate in the wider world. He’s transitioning into adulthood. And while his transition will be on a different time scale and the goal is more about interdependence than independence, he still needs us now to start that preparation. And this means more than just ensuring he has ‘learning for life’ skills as his school calls it. He needs to be a self-advocate in a system that is harsh and that ignores too many. He needs to know that he has the power to wave that badge and ask for another queue even if I am not there to do it for him. To seek accommodations from an employer. Or to stand firm when some FASD-denier or cost-cutting and overworked bureaucrat belittles his condition or seeks to rescind his benefits as happens all too often to adults with FASD.

The second thing that happened this week was going to the local college’s open day (in England students must be in school until 18 but can switch at the age of 16 to ‘colleges’ that offer wider ranges of programmes). Yet again, we weren’t sure we’d be able to get there. It involved going out in the early evening, never easy once he’s come home from school and is unwinding from the day. He decided to bring his new build-a-bear rainbow cat called Sparkles. The designers of the 02 are clever people, placing a mall all around the arena entrances. No doubt we are not the only concert goers to have spent an extra wad of money there. And this workshop with its accepting employees explaining the scented inserts and beating hearts and soft plush huggable toys was pitched at just the right level for our son who needed some reassurance and comfort in an unfamiliar place.

So there we were at the college open night, carrying the unmissable Sparkles and concerned that the too-small-now silver-sparkled high heels our son was wearing might be too uncomfortable for walking around the campus. But he was insistent. He knows he won’t need to wear a uniform at college and this means he can choose what he wears, this was not the night to battle over attire even if on practical grounds. (When they were making Sparkles’ birth certificate at the build-a-bear workshop it was the first time I had seen our guy tick the ‘prefer not to say’ box for gender, so we did likewise when filling  in his college application.)

I had not anticipated that this was a general open night. There we were waiting in yet another chaotic queue, this time without any lanyard and also potentially needing to escape if our guy became too overwhelmed. Once we got past the initial scrum and were brought to the separate building that houses the inclusive learning section all was well. But standing there in that glorious mix of a mainstream school hustle and bustle with kids who seemed so much older and who were towering above our guy, those old familiar worries crept up on me. Will he be safe here? Will they bully him? Will he be understood? Is he ready?

We have had 3 years where he has been in a protected environment at a specialist school and that has allowed him to relax and to grow. I know this college also will protect him but it’s less isolated. To get to their inclusive learning building you have to walk right through the main campus.

“I only have one more year of school,” he said that night and that’s when this hit me again. We haven’t really been talking with him about his future. “You can stay in school until you’re 25 if you want.” His eyes popped out of his head. “It’s not like school now. There are all kinds of things you can do. Music or whatever you want. You can do a supported internship somewhere. There are lots of options. You don’t need to decide now.”

In other words, that Education Health and Care Plan was hard fought for and every ounce of its superpowers will be utilised.

You have a right to education and supported internships, my son. And we have a job to do to help you understand those rights and all the other rights you have.

A friend took me to task for using the term ‘disability’ when I told the story of that night at the 02. Of course. I was appalled at myself for using it. I know that our son has strengths. I celebrate diversity and uniqueness. I am well aware that the term is fraught with negative connotations. As I said, this was the first time in 15-1/2 years he heard it. And I am kind of proud of that. But sitting in that relaxation pool where he was pretending the overhead water jets were the ice bucket challenge, I forgave myself. And realised we can’t ignore the word either.

We must reject the stigma around the ‘d-word’ and ensure our guy is not ashamed of claiming the supports and benefits that society has legislated are his by right. If that means at times waving a disability pass, then we have to show him how to do that with pride and with strength, not to hide in a queue that might be suffocating or drowning him. If we don’t lift him up now and prepare him for those moments then, who will?

A Bug, BRAT and Hope

 

Blog Virus[We’ll post an audio recording of this soon, apologies for the delay for those who prefer that format.]

By SB_FASD

Curled up, knees to his chest, our guy has been seeking relief from a sore tummy. There’s nothing more heart wrenching as a parent than knowing your little one feels unwell and you can’t really do anything to help. Time must run its course.

Viruses are inclusive. They hit little ones no matter what their cognitive processing abilities. But there are some special challenges they bring to homes like ours.

He is so thin. We have to watch closely to ensure he doesn’t become dehydrated. It’s hard to know just what he is experiencing. For anyone with sensory challenges, a virus like this is a nightmare. Linking cause and effect is not easy for those with FASD. So, it’s hard for our guy to make sense of this onslaught his body is facing. He has a milk protein allergy and he has learned over years that food can affect his digestive system. He is asking me what are foods that he ate that might have done this to him. “It’s not what you ate this time, it’s a bug.”  A pause. Oh, wait, I have to watch what I say. I think fast as I see him trying to wrap his head around that. “When I say it’s a ‘bug’ I don’t mean it’s really a bug, that’s a thing people say when they mean a ‘virus’.” People with FASD are literal thinkers.

We’ve had days of this now. We are being given updates and descriptions of the outcomes. He is perseverating on this illness and counting the explosive results. To be fair, I don’t blame him. It’s been quite spectacular.

He came to me a day or so into it all, with his phone in hand. He had researched and said he needed the B.R.A.T. diet (bananas, rice, applesauce and toast). He was asking us to buy some applesauce.

I stopped in my tracks.

I let that sink in.

Our son, now 14, who has been feeling really horrible used technology and found an appropriate strategy to deal with his symptoms. The B.R.A.T. diet is not something we discuss around here. He found his way to this on his own.

That is HUGE. It’s such an encouraging sign. (Even if he perhaps predictably rejected the applesauce after one bite.)

He has been patient. Lying still. Going up and down stairs hurts his tummy. He texts me what he needs and with his updates on the toilet situation. I find this incredibly encouraging.

People have different views on allowing children to use technology. I am willing to admit we are liberal parents when it comes to this question. But we are doing this consciously and not out of parental laziness or laxness, as some might think.

We believe our son’s future success will depend heavily on his use of technology.

This illness has shown us a glimpse of how that is true.

It’s not just that he found an answer on the internet. But he considered much input, sifted through what Google showed him and he found the right answer – the B.R.A.T. diet (or at least what used to be considered the right answer, I know the advice is changing,). Most importantly, he has been using technology to help us help him.

A second example of hope in the midst of a possibly really hard time – he asked for a bath. That doesn’t sound spectacular. But I had thought having a bath just then was counterintuitive. He wasn’t feeling well. We had agreed he’d stay home. He didn’t need a bath for school. I admit it, I was a bit exasperated with the request. I help him with washing hair, etc. and I hadn’t planned on him needing one this particular morning. I was trying to work.

He persisted. I relented. Then, when he was in the bath he said quietly, “This helps my tummy Mummy. When my tummy is in the hot water it feels better.”

Oh my goodness. I felt like angels were singing. I was so excited that he had thought this all out. He remembered the way he felt the day before when bathing. He was trying to think of what might make him feel better today. He pushed for a bath even in the face of my discouragement. Though a bit late, he eventually told me why he had wanted the bath. And again, he was right. He had chosen the right strategy. He trusted I would eventually listen instead of giving up on his idea and retreating.

Again, he was ahead of me in figuring out what he needed. He was problem solving for himself. Appropriately. These moments are so important and so encouraging.

A third example…

We decided to call 111 (an out-of-hours medical line here in England). He recently started taking some medicine designed to help bladder issues and we just weren’t sure if some of these recent problems might be side effects of the new medicine. They asked us to bring him in on a Saturday morning. Our son was not especially feeling well, walking down stairs he had to stop. In prior years we may well have not been able to get him out of the house for this, it might have led to a meltdown. He asked exactly where we were going. We explained. We gave him advance notice. Some reminders as time was getting closer to leaving the house. Before we left he grabbed a wad of Blu Tak. (For those who don’t know it, it’s like putty, it’s used for hanging things on walls.) He didn’t say anything, just picked it up. I commented, “That’s a really good idea to bring that to help you. Well done!” He smiled a small smile. Having something like that to squeeze helps him to stay calm. It was just a simple thing. He didn’t make any big deal about it. He was just naturally implementing a self-regulating strategy at a time of potential stress.

It’s hard when our guy gets ill. His body doesn’t handle sensations in the same way as my own. I had actually said to my husband, “For all we know, he could be having an appendix attack, we just don’t know what his pain threshold is at the moment.” The words our son uses to describe how he is feeling are different than words I might use. We have to listen very hard and we have to be very patient to ensure he feels ‘heard’ and feels encouraged to continue to try to explain to us what he is experiencing. It is too easy in those moments of stress to talk over him or to assume we know what he is trying to say. The whole conversation has to go slowly.

We encountered two doctors this weekend who were both good in dealing with someone with a neurodevelopmental disorder. Once on the phone – the out-of-hours doctor who kindly sent us to a quiet clinic rather than the busy hospital A&E. And then the doctor who saw him in the clinic, who was very reassuring.

Unbeknownst to our son, I had assumed he was going to end up with an IV in A&E.

But here is the final, fourth oh-so-encouraging thing that happened this time. Our son has listened to us and he has been drinking tiny amounts. He was not dehydrated. We did not need to go to the hospital. What a huge relief. We have been telling our son how important it is to drink. When he rejected the prescribed medicine once we were at home (and I really don’t blame him, it is foul-tasting), he then asked me about ice lollies. I said ice lollies are good since they melt and are liquid. He asked about sorbet, does that count? And I said it’s not the same. It’s still good for him to have, but it’s not as good as liquid.

So, do you know what? Our son who was having trouble moving around, got down onto all fours and started searching in one of the cupboards. Again, I felt my own frustration rise. “What are you looking for? Can I help?” No answer. My consternation went up a notch. But then, there he was. He had found our silicon ice lolly molds, proceeded to fill two with Lucozade and asked me to put them in the freezer for him for later. I cannot tell you how very, incredibly proud I was at that moment. Again, he had gone to a place I had not in my own head. He remembered the doctor had said Lucozade (a sports drink) is okay too. He came up with a strategy to help himself. And he was right. Frozen Lucozade ice lollies are a great solution.

If you don’t know the worries about the future that come with being a parent of a child with additional needs, maybe these little moments won’t seem like a big deal. The biggest fear I have is how he will fare as he becomes an adult. Will he be able to look after himself? Most importantly, will he be able to identify and be able explain to others when he needs help?

As I lay there last night trying to fall asleep, I was thinking over all of this, replaying it in my mind. I disentangled my own tiredness with the other emotions. A strange bit of elation was tugging at my thoughts. I had a little light bulb moment when I realised I was filled with love and pride over how our son is learning.

That feeling I was having trouble identifying? It was hope.

Who knew a nasty intestinal virus that has me bleaching every surface would leave me feeling so happy?

Slow It Down and Listen

BLog_SlowDown

By SB_FASD

The phone was broken.

Trainers were hurled against the bedroom door.

The day had been building to this. The car fuel warning light had pinged on. Traffic was heavier than usual. It was too cold outside. His finger was sore where he had bitten it. The car was rubbish. The queue in Subway was too long. He wanted to go home. Now.

The week had been building to this. School was boring. There’s too much writing. A teacher was out ill. His tummy was hurting. He doesn’t want to go back to school for one whole week. He needs a break. Two weeks. The pogo stick is too small. His toenails are curved. The unicorn cupcake tastes like washing up liquid.

There had been an incident two days prior where someone he didn’t know tried to contact him via his phone. It led to a concerning scene that ended up with his dad, me and the head of year in the deputy head teacher’s office, all praising him for doing exactly what he’d been taught to do. He had told a teacher. He hadn’t returned the call. The incident was – we think – benign, but it had scared him and us. This phone had caused angst this week. He hadn’t tried to break it. It had dropped. A few times over a few days. The screen was dead. He was beyond coping with it. With anything.

We were there, in this moment. The phone was really and truly dead. We were home alone, just he and I. I was tired. Really mentally and physically done in. It was the first day I had been out, shopping, in more than a month since having had the plague.

I started down the wrong path. “What do you want from me? (said with a bit too much oomph) I’m sorry the phone is broken. But WHAT do you want me to do?” Those eyes ready to crumble caught mine.

And I stopped. Quickly. I had voices in my head. Voices of adults with FASD who have over years helped me to see this scene from another viewpoint.

I swallowed my frustration. I forgot about the money. I forgot about the warnings I had given about needing a better phone case.

I just sat down by him, silent. Quiet until I was ready.

I gave him a hug. To his rambling, steady stream of barely connected thoughts and anxieties about how he should never have a phone, he can’t be trusted with a phone, they’re all rubbish anyway, he shouldn’t have a phone until he’s 20, I just said,

“It’s okay. You’re okay. I love you.”

I offered to give him a foot rub with lotion. I saw he was frantically scanning the room and everything he was seeing was upsetting him. I wasn’t sure more things would not soon be flying. I was in my head trying to think of who I could call because I knew this night, this night I might not be able to handle this. I was frazzled and still slightly ill. I felt my self-pity rising. I started wallowing in it, feeling it was unfair that once again it was me having to defuse yet another situation. It was borderline at this moment. I suppressed my rising distress. I narrowed us down so we both could forget all the rest of it. I needed to get my head on straight.

I asked him to close his eyes and just to concentrate on his feet. I rubbed his heals. I know he likes that. I added more lotion, warmed up in my hands first. I didn’t say anything more for several minutes.

Our heart rates slowed. The stream of unintended words had stopped. We were just there. In the moment.

Finally after the tension had melted a bit, I suggested we go sit on the bed in my room and watch a favourite movie. It reminded me how long it had been since we had done this, side by side, close.

He had brought some journals into the room with him. I wasn’t paying close attention. He opened one. I was still fiddling with the remote, trying to get the movie started. I was, if I am honest, desperate for an electronic solution to the evening’s tension. He put the booklet directly under my nose. This was important to him. The movie wasn’t the point here.

Again, I slowed down. I shut up. I listened.

I looked closely. I recognised it. It was an old home-school diary, the one with the rainbow cover. We haven’t used this in well over a year, with a different teacher, a different Key Stage. He had remembered he still had it. He opened it to a blank page, instructed me to pick up a pen, to write a big “2019” on top of the page. He told me he wanted me to write to his teacher. He told me what he wanted it to say.

He hasn’t been having his sensory breaks at school. He needs them. He feels like the rules have changed, he is not allowed to go to the sensory room this year. He wants to know why. When I said the teachers tell me he is allowed, he was insistent. They are NOT letting me go, Mum. (Listen to what he is saying, I told myself. This is important.) He told me he loses house points if he goes out of lessons. (What?!? But I stay silent, I listen, I write, and I plan the next email to the school in my head.) He misses the time when he gets to relax during the day with the school dogs. He feels like it’s all too much sitting.  Too much writing. He said it is just like his old mainstream school. It’s changed at this specialist school. He can’t handle it. He doesn’t want to go.

I wrote it all down, increasingly amazed at the moment that was unfolding.

He was using his words. He was using the tools he knows that are available (tools I had forgotten) to express his needs. He was instructing me in how to advocate for him. Somehow, in his non-linear way, he was showing me the root of all that had happened today, this week. The cause of his escalating anxieties, the reason why our house has become increasingly tense over recent weeks.There is a reason.

There is always a reason. Sometimes many.

I seem to have to learn this lesson again and again and again.

Meanwhile, after we put the diary down, after he tucked into a tray full of his favourite snacks, I snuck a peak at my phone. There was a ‘situation’ heating up in an online group. An adult with FASD was expressing raw frustration over the way parents and carers too often vent their frustration in support groups. It was reminding me with sadness of recent comments and posts I have seen. One adult with FASD said (I paraphrase), “We know what people think of us. We know. We internalise that every day. We need our parents to be our safe haven.”

I vowed once again to always try my best to listen to what my son is saying to me, to always speak with him and about him with respect.

Everyone with FASD is the primary expert in themselves.

We need to be the experts in listening to those we love and sometimes in serving as their translators. Because, even if sometimes a person with FASD – big or small – might be unable to form the words and sentences in polite ways or in pretty paragraphs that help us ‘get it’, there are many ways different actions, behaviours, anxieties and sensory issues show us hints that there is something we need to understand better.

Like, say, when unicorn cupcakes taste like washing up liquid.

The best, most effective thing we can do sometimes is simply slow it down and listen.