Seeing What is Not Seen in the SEND Debate: FASD

Blog SENDMarch

By SB_FASD

On 30 May children and families took to the streets in cities across England to fight for more funding for special educational needs and disabilities (SEND). Petitions were delivered to centres of decision-making. Twitter lit up with the hashtag #SENDNationalCrisis.

In a powerful piece in The Sun, Chair of the Select Committee on Education in the House of Commons Rob Halfon, MP wrote that: “No fewer than 78 per cent of permanent exclusions are issued to those with special educational needs, with 4,000 special needs students being excluded every week.” In another piece it was stated that “According to the NEU teaching union, special needs provision in England has lost out on £1.2 billion since 2015.” It’s a crisis all right.

The reality behind these figures was laid bare in a tweet by @Dyspraxialife: “It’s easy to show compassion for a child who is struggling. They have innocence, purity, vulnerability and the cute-factor. I wonder how many homeless people who get walked past every single day were once struggling children. Instead of love, they now get spat at and demonized.” This isn’t about ‘others’ – it’s about the health of our communities, the kind of society we hope to be, the smart use of limited resources. It’s about political will and choices.

So why do I feel like the air has been knocked out of me?

I see what is not seen, the “pink elephant” in the room as some advocates have started to call it: FASD. Foetal Alcohol Spectrum Disorders.

The best study to date in the UK says more than 6% may be affected by FASD, organic brain damage resulting from exposure to alcohol in the womb. FASD has been called a ‘hidden epidemic’. Statistically it affects more people than autism.

As I scroll through videos from the marches, I hear clusters of diagnoses and symptoms that match a pattern not uncommon among those with FASD: ADHD, ASD, OCD, hypermobility, dyspraxia, etc. I hear parents discussing exclusions from schools due to meltdowns that schools cannot handle.

I fear there are many missing the vital insight needed to put in place appropriate supports for their loved one, a diagnosis of FASD. FASD is a full body diagnosis, more than 400 conditions co-occur. Alternative strategies are needed at home and in school. Kids with FASD are often punished and excluded for behaviours that result from cognitive processing and sensory issues that contribute to a lack of impulse control, an inability to consistently remember what has previously been understood or to link cause and effect. Transitions are hard. The dysmaturity involved means everyone around the young person needs to adapt expectations and change the environment to give that person their best chance to succeed. Without lifelong support, the statistics for people with FASD are truly grim. Homelessness is just one of the possible outcomes.

There is great stigma at play here, fueled by a devastating lack of understanding. To even raise FASD in many parent-advocate or professional forums can bring a barrage of negatives based on the old-school shaming-blaming ethos. But we can frame the discussions differently. As outlined by the late Pip Williams, founder of the UK and EU Birth Mothers Network-FASD, the reasons why women drink in pregnancy are complex. Many pregnancies are unplanned. Most women don’t have the information about the risks of alcohol in pregnancy. Very often pregnant women are not drinking alone. For those who need help quitting, support services are severely lacking.

To help confront this stigma, my husband, son and I marched yesterday carrying huge brightly coloured signs made by the wonderful young people in the E. Herts and Area FASD Club that simply said “FASD” on them, wearing hats that said, “Ask me about FASD.”

One person who did ask was a recently retired Special Educational Needs Coordinator who had worked in two different schools. She didn’t know what FASD was. As she thought more about it, she said she had one child once who had Foetal Alcohol Syndrome (this refers to the 1/10 of those on the FASD spectrum who have certain facial features). A career SENCO would have had many, many students with FASD under her charge. Her question shows the vital importance of increased training on FASD at the frontline of SEND services. People don’t know what they don’t know.

We lasted at the march as long as we could. But there are no pictures of our signs out there in the news reports. To be fair, we left early. Our son with FASD was overwhelmed by the sensory input – the shouting, the whistles, the heat, the stop and go. Cognitively he was overwhelmed, unfamiliar with the march route, his anxieties soared. We didn’t even make it to the centre of the town, but we peeled off from the others, called it a success and came home. That’s the reality of life in our family. And the very many other families who were unable to be out there yesterday.

The tragedy of this absence from the debate is what has knocked the wind out of me. We know that early diagnosis and appropriate support create happier families and brighter futures for those with FASD.

And yet, even on a day when the streets are full of those with special educational needs and disabilities, our kids are still not part of the picture.

But I won’t stay down for long. I know change is coming. In England next year there will be a new NICE Quality Standard on FASD. Soon the health care system will be held accountable to improvements in services for those with FASD. The educational field too will have to wake up to FASD.

There will be no lasting solution to this SEND crisis unless and until FASD is a part of the picture.

The Same Child Shines When Seen Through a Different Prism

 

Blog_DifferentPrismBy SB_FASD

We’ve said it before, our guy seems to learn in leaps.  It’s never a steady upward curve for him.  He plateaus and then without any seeming rhyme or reason to it, he jumps up to the next level.  Each time this happens, he falls back in other areas.  Perhaps foolishly, each time it happens, we allow ourselves to be hit hard by the regression.

We are in one of those times.  Our home environment is suffering.  Our pre-teen son is increasingly armed with new vocabulary and new attitude, fueled by a new edginess in what he is watching on YouTube.  Social pressures at school are causing him great distress.  He is getting less physical activity now that he is at a new school.  His walks to and from school and his after school activities have been replaced with time spent in a taxi.  He is out of the house and ‘on’ from 8:00 am until 4:00 pm.  It’s a long day for anyone, and especially for him.

When I snuck away to write this blog, I was feeling down.  I was thinking of the rough morning we just had (diverted eventually by a walk along a river). I was still smarting from the rough night we had last night (diverted only by nearly two hours in a pool) and the string of other rough nights and rough mornings we have had lately.  I was thinking of the harsh words between my husband and I, and the dismayed look on our elder son’s face as the tensions mounted.  Again.  The way the dog sometimes gets wide-eyed.  The mess of the house.  Work stresses.  The fact that this morning we rushed out of the house after a meltdown, in survival mode, and I haven’t had a shower.  Again.  How even the bacon sandwich I allowed myself as a ‘treat’ from a café while we were wandering was disappointing and flat tasting.  Yes, when I started writing I wasn’t in a great mood.

Then I remembered that a school report arrived yesterday.  I stepped away from the computer to have a read.  Page by page, my mood lightened.  I was stunned at my own inability to understand what I know.  Yes!  It hit me.  Our son may be regressing at home, but at school he is progressing in leaps and bounds.  These things are never unrelated. Once again, I am amazed at the difference it is making now that he is in a specialist setting.

Last year at the end of the year we wrote about how we were so crushed by our son’s report card, we never let him see it.  In contrast, this time I called him onto the bed where I was writing.  I told him I had his school report and wanted to show him.  He groaned and visibly moved away from me, alarmed and ready to bolt.  I put my hand on his back and said, “No, wait – it’s excellent.  Listen.”  He looked up into my eyes, searching.  And we skimmed his in-depth report together.  He became more and more interactive, more excited.  After one especially positive comment, he whispered with utmost pride, “Maybe I should get a new toy!”  (Proving that at least in some cases he can link some cause and some effect and also showing perhaps not flatteringly that as parents we have not been above pure bribery in the past.)

In a school that understands not all kids’ brains are wired the same, here’s what these new teachers wrote:

  • “He’s an eager and enthusiastic pupil”
  • “He has great ideas”
  • “He is not at all afraid of thinking outside of the box”
  • “His work benefits from his imagination”
  • “He makes his presence felt with his enthusiasm”
  • “He is keen to achieve good results”
  • “He is gaining greater confidence”
  • “He is a talented musician”
  • “He has an ability to create exciting and engaging musical performances”
  • “Polite”
  • “Very able”
  • “His attitude toward learning has been excellent”
  • “His confidence has improved”
  • “He has managed to express his colourful personality”
  • “I am delighted to have a pupil of such creativity and imagination at the school”

Let’s get this straight.  This is the same child who last year was chided in his report for “disruptive behaviour,” for being “silly” and “distracting.” The discouraged boy who was told he “needed to understand” his behaviour was “inappropriate.”  Who was marked down because he couldn’t pay attention for “more than five minutes.”  The kid who we couldn’t get out the door to school because he was under so much pressure we thought we had broken his spirit–this was happening as recently as five months ago.  He’s the same kid.

I was especially struck by the comment on his current report from a science teacher.  Last year, his science teacher commented on his final report that he repeatedly cried throughout the year when given instructions.  Her reports were never positive, she saw only a problem student.  Cue to this year, and here we are: “He has worked hard in science lessons. He generally grasps new concepts quite quickly and enjoys the opportunities to work practically.  He observes scientific experiences carefully…He follows instructions well and can work in a careful, systematic manner.”

THIS IS THE SAME CHILD.

I want to rattle some teachers.  I know, I know all about the pressures you are under.  But shame on you if you have a child in your class that has a disability and you refuse to learn about how to help that child, you turn away offers from parents who seek to help you understand, who offer to work in partnership with you to help you reach that student.  We hear about it all the time.  Those few of you who refuse to grow professionally are suffocating the spirit of our kids who need you most.  (There were many heroes in his mainstream education, but there were also a few who were truly deplorable.)

He was so proud, so very proud of this new report.  He put his head on my shoulder, squeezed hard, while remembering to ask if it was my sore arm.  (These moments of blatant awareness of others are still few and far enough between that they jump out at me.  I was touched that in this moment of triumph he was also then able to think about me. I am sure there is a link).

We also talked about some of the comments that show his FASD is still affecting his ability to access education fully.  He is starting to know these are areas where he always will have difficulty due to his FASD, areas where he will need to put strategies in place.  When he read the bit about how he “can easily become distracted and lose focus,” he said, “that happens sometimes, doesn’t it?” We acknowledged but brushed over the comments that “he has yet to grasp cause and effect” and “he must ensure he always listens carefully to an instruction so he knows what is expected of him.” We will continue to work with him to understand his FASD and also with his school to ensure they understand these challenges are not due to willful disobedience, but because he will always, for life, need instructions broken down – preferably shown in a visual format, maybe even rehearsed. Whereas previously these sorts of comments dominated his reports, this time, these comments were decidedly in the minority.

The most touching moment was when he asked me to explain this comment, the one that made my mood brighten most: “He needs to believe in himself because he already has gained the respect of many of his peers.”  We went over that together, slowly. As its meaning sunk in, he glowed and I basked in this new space.  He’s made great leaps forward.

It doesn’t mean what’s happening at home is not real, not concerning, not demanding attention and strategies.  (Of course, when things are flying and getting broken we must hear what those behaviours are saying and make necessary changes.)  A positive report doesn’t make his social challenges any less difficult (he told me heartbreakingly the other day he will “never be happy again” because he is “bullied every day, every year”).  But seeing this report does help me believe that those educators around him can help him get past that hurdle too.  He may be having trouble with one or two kids, but he also is “earning the respect of many.”  Can you imagine how wonderful that is for a kid who has been shoved aside, jollied or sidelined by too many of his peers throughout too much of his education up to this point?  Yes.  We are on a whole new level.  Somehow, I have been letting down my guard and letting negative thoughts in.  I have been forgetting that with great progress comes some setbacks in other areas.

Remembering that makes it all a bit easier.

At least, it should.

I’m trying.

————
P.S. – To top off the transformation of my mood, I just read this most fantastic piece by Dr. Nathan Ory, “What It’s Like to Live With Fetal Alcohol Spectrum Disorder.”  I hope everyone will take a chance to read and absorb his insights.  Share it with the schools.  He sums up in one paragraph why I think our guy is doing so well in his new setting (and it’s a timely and important reminder to us at home to keep smiling even through the hard times):

Children growing up with these types of differences in their thinking and learning processes often become very emotionally fragile. They don’t “get” why people are distressed with them. They experience that others are distressed with them and often mirror or reflect back the very emotion that is being shown towards them. For these children, it is very important to really like them when you are speaking to them. They work more off the emotions of those around them than the words and actions of those who are guiding them. Being emotionally angry towards them always further escalates their behavior….These are not bad kids. Often they are working heroically to overcome their learning disabilities and to participate in the world wherever they are able.