Recently the Dude has had a fantastic time where his seizures are concerned – they’ve been almost non-existent, something we never dared believe could happen.

He’s been happier, chattier, more interactive, and has been able to just enjoy being a typical 9 year old for once.

The problem however is this; Sam doesn’t have ‘typical’ epilepsy.

Sam’s is deemed intractable – medications, the ketogenic diet and a vagus nerve stimulator have all failed to stop the seizures.

They have all helped, and our current good run is a large part thanks to excellent management of his health by his neurologist and palliative care consultant.

He is sleeping better so is less tired (a major seizure trigger); now he is off artificial formula his digestive tract is functioning better, he isn’t in discomfort and is able to enjoy his day much more.

Likewise, he is on a combination of medications that are all kept to as low a dose as possible to effectively manage his seizures etc., while reducing the impact of side effects.

He is one complex little chap.

However, with intractable epilepsy you know that every good run will eventually end, and the seizures will increase again.

Let me be honest. Its brutally hard to enjoy the moment and the good times when you know the bad times WILL return.

And with them, the risk that you could lose your child increases exponentially.

Epilepsy is a nasty little beast.

The seizures can be insidious, barely visible to the outside world but causing havoc in the brain.

Or they can be sudden, aggressive and powerful, stopping breathing in a moment but passing within seconds.

The very worst ones are powerful but long, and for those that don’t stop on their own we have equally dangerous, potent rescue medication to administer; medication that itself could kill our son.

It is not an easy thing for anyone to live with, especially not a 9 year old child.

We have seen the seizures changing again over the last few weeks.

However, we’re optimistic that with the excellent management of his various conditions he has currently, things will stay more-or-less stable for a while yet.

We’ve been through hell and back the past several months.

Sawyer’s hip surgery was anything but by the book and he ended up in extreme pain and with a severe case of pancreatitis.

We did this surgery to give him the best possible future.

It was a decision we didn’t come by lightly but we wanted to give it one shot.

It has been 3 months since surgery and Sawyer is only just now beginning to take steps again.

He still has muscle cramps and he still gets very sore but we can see the light.

Every day as a parent you make decisions for your child.

It can be small or it can be a large decision but they are equally important for your child’s well being.

It’s the repercussions of those decisions that vary.

We met with our orthopedic surgeon yesterday and Sawyer’s ball joint is DYING.

He says that this is normal after a big surgery like he had and it will regenerate but he may have some stiffness and pain in that joint for up to a year.

He also mentioned that his increased muscle spasms is normal and can last much longer after surgery since such a huge surgery threw his body out of whack.

While we very much trust this surgeon it wasn’t easy news to hear.

It feels that although we did this surgery and he is improving, he may still have a long journey to being back to normal.

Our biggest question we have is “When is the payoff coming?” Will he get back to himself and then we have to do another surgery to remove the plates from his femurs.

Will there be a payoff or will this have been a long and exhausting band aid fix for the bigger problem, his cerebral palsy.

We are heading to an intensive therapy in April and we are excited to see the flexibility and movement that we will see after therapy.

Even if Sawyer feels better and learns how to move his body in a way that works for him we will be happy.

He brings us so much joy each day and the least we can do is give him every opportunity to thrive.

March 21^st is World Down Syndrome Day.

In the US, they also have a whole month, October, dedicated to raising awareness of Down Syndrome (or Down’s Syndrome, as we call it over here).

But do we really need to ‘raise awareness’ of Down’s Syndrome?

After all, it’s hardly a rare or novel condition – it has existed as long as the human genome, and occurs all over the world, in all sections of the human population.

Surely everybody already knows about Down’s Syndrome?

Certainly, people seem easily able to recognise the outward features of Down’s Syndrome.

In public places like shops, libraries, and hotel dining rooms, strangers see them in my son and are instantly aware that he has Down’s Syndrome.

I know because they make comments like:

‘Bless! They’re always happy, aren’t they?’

‘Oh, we’ve got one of them in our street.’

Because what they see when they look at him is not a boy cropped blond hair and skinny jeans who happens to have Down’s Syndrome – they stop seeing him as an individual as soon as they clock his eyes and the outline of his neck.

Received wisdom gets in the way of true vision — what they see is an outdated stereotype of the condition, a cardboard cut-out with a bowl haircut, ill-fitting, dowdy clothes and the vacant gaze of a person denied education, a family life and stimulating, purposeful activity.

What they see is a caricature of the institutional past.

Clearly, then, we DO need more awareness – awareness of the facts about Down’s Syndrome, and of the reality of life for people with Down’s Syndrome in the 21^st Century.

That is why, on March 21^st every year, we take the opportunity to celebrate people with Down’s Syndrome, and all the wonderful qualities they bring to the world – because that is the best way to call the world’s attention to just what people with Down’s Syndrome can achieve, and what fulfilling, well-rounded lives they can have, when given the opportunity.

Or, at least, that is what many in the ‘Down’s Syndrome community’ do.

Me? I tend to go a little quiet, hang back — because, for all it’s positive, celebratory tone, World Down’s Syndrome Day – any Down’s Syndrome Awareness day or month, leaves me feeling a little hollow, deflated.

It doesn’t seem to matter how many facts we share, how much positive awareness of the realities of our lives we share, no matter how many parent advocates have been doing exactly this for decades before us, there is always the sense that the general public never quite embrace all of this as the truth.

It’s like they have a desperate need to cling to their old ideas.

Whatever you say, it’s like there is always a looming ‘but’ hanging in the air.

‘But’ may only have three letters but it is a very big word. It contains a whole world of, often unspoken, prejudices and fears.

‘But they’re not all like that.’

‘But I couldn’t cope.’

‘But I don’t want that kind of life.’

In other words, ‘that’s all very well for you, BUT not for me’.

And that brings us to the crux of the problem with awareness days.

There is something that we need far more than awareness, something that no amount of positive awareness seems able to bring – acceptance.

By acceptance I don’t mean simply accepting that people with Down’s Syndrome exist or accepting the fact that people with Down’s syndrome can have good quality of life or can achieve many of the things that their mainstream peers can.

I mean true acceptance.

True acceptance means accepting that people with Down’s Syndrome are your equals in human dignity and human rights.

It means accepting that people with Down’s syndrome have a RIGHT to exist and a RIGHT TO LIFE, the same automatic right to life that you and I enjoy.

It means understanding that it is unethical, morally reprehensible, and just plain WRONG for Down’s Syndrome to be targeted by (and be touted as the poster-child for) a publicly-funded healthcare initiative whose mission is to deliberately seek out Down’s Syndrome in the womb solely in order to offer parents the chance the abort the foetus.

An initiative which provides a recognised pathway of care for those who opt for termination but no equivalent care pathway for those who do not.

True acceptance means understanding that this is a fact and not a matter for debate.

We recently loss my mother-in-law and I often wonder if our son understand that he won’t ever see her again.

In 2009 when my amazing Mom passed unexpectedly our son was only two years old.

After she died, he would always crawl to her room looking for her every time we would go over my grandma house.

He did this for a very long time. And one day he just stopped.

I can’t remember how long it was before he finally stopped.

But every time he would go to her room, we would always tell him that grandma was in heaven now.

I always wanted to know what finally made him stop going to her room but he’s nonverbal so that’s of course something I will never know. (We love and miss you Momma, Ms. Tracy Denise Graham)

Fast forward to today.

We loss my sweet and loving mother-in-law Ms. Brenda Kay “Blondie” Evans unexpectedly in January.

Of course, my son is older now, he’s fourteen to be exact.

Since her death we have gone to her house several times.

I always watch to see his reaction when we go there.

We’re so use to her coming outside to the car with that big smile on her face and he is too.

Sometimes when were there he has moments where he won’t scream, he just sits there quietly and look around as if he’s looking for her.

Then suddenly, a smile will come across his face.

Her presence is still very strong because I feel it often.

So sometimes he makes me feel like he feels it too.

I told him when she passed that she went to heaven too.

I just wish he could tell me that he understands what I mean.

I truly believe that he does because although he’s nonverbal he’s smart.

It is just something I can’t help but to think about.

Have any of you ever felt like this?

As Cerebral Palsy awareness month grew near this year, it was something I thought about often.

As an adoptive parent and specialized foster parent, I have cared for a number of children who live with Cerebral Palsy to all different degrees.

For some of them, it is a slight condition that barely affects their daily living.

For others, it is a much stronger force in their lives.

As I pondered what I could share for Cerebral Palsy awareness month as a mother and caregiver, I kept coming back to this idea that if I truly want to grow awareness in a new capacity.

I must find a way to place the awareness megaphone in front of those who are more aware than any: Those who have been diagnosed with Cerebral Palsy.

I presented to idea to my eight-year old son who has Cerebral Palsy and he was thrilled.

While he lives with a long list of medical conditions, Cerebral Palsy is one of his diagnoses and something we speak of often.

He—more than anyone else I know—can give us valuable insight into what it means to live with Cerebral Palsy.

Using his eye-gaze operated communication device, he and I came up with and talked through a number of questions that he answered beautifully and thoughtfully.

Some of his answers surprised me. Some of them didn’t.

All of them were fully, completely his and worthy of being listened to. The bold words in the writing below were spoken by my son in response to my questions and prompts.

I am: funny

I am: Important

I am: Smart, and (his name)

And I also have Cerebral Palsy.

Cerebral Palsy makes me feel: hurt, lazy, alone, trapped

Cerebral Palsy cannot take: My voice, jokes, God—talk to

Takes friends

I wish people were aware that Cerebral Palsy: is bossy, join (I want to be included), pain, my body not my mind

I don’t like it when people: Baby (talk to me), rude, (comment on the) Noises I make, ignore me

People say you are brave a lot. Do you like that? Do you think you are brave?

Yes. Yes. Yes. Yes.

Do you think Cerebral Palsy is part of what makes you who you are?

Yes.

My son is made up of a million wonderful, unique, incredible aspects.

He has Cerebral Palsy. He is so much more than only Cerebral Palsy.

He also knows and wants others to know that his Cerebral Palsy—as well as his other diagnoses—shouldn’t be ignored, overlooked, or avoided, as they are huge, important parts of him just like his favorite movie or his sense of humor.

He feels many things about the conditions he lives with.

He also knows they are just one piece of the incredible human being he is.

Thank you, sweet son, for writing this post with me.

Creating a more inclusive world is everyone’s job.

Some of us chose to do it, some of us didn’t, and others need persuading that they should.

For those who chose to make inclusivity a priority they’ve brought on themselves a difficult task.

They don’t necessarily have the personal experience to draw upon, which can make their arguments less emotionally appealing.

On the other hand, those of us with a special needs family member can be overwhelmed by our emotional ties, often making others feel uncomfortable when we talk about issues on the subject.

And without an intentional choice to learn about special needs nor a personal connection to them, it can be challenging to be on the receiving end of an education on the issues.

None of us has an easy time learning how to advocate. But we can get better at it.

As a special needs professional, such as a therapist or special ed teacher, you can use your knowledge to educate parents of other students or speak directly to children about the physical differences of people.

Your expertise can be very helpful to those outside of the special needs community, especially when you prioritize acceptance of physical differences and the value of every person, no matter what they can or can’t do.

As a special needs parent or caregiver, your experience is your strength.

Tell stories, of every kind: Stories of struggle. Stories of plateaus or goals met. Stories of pure joy. Stories of the mundane. Tell them all.

If we share more of our world with the world at large they will see that we are an important part of it and that we’re not going anywhere.

If you are in the third group, those who need pure education about inclusivity and the special needs community, please be patient and try to listen.

Just as you desire to be acknowledged and accepted, so do we.

Above all else, do not pity us.

We do not see our belonging to this community as a burden, we view it as a gift.

You don’t have to understand that, but we appreciate when you hear us say it.

I’m not a huge fan of rock music but my husband, Ryan, is.

While I don’t really “get” the genre (to say the least…sorry rock fans!), one of the “softer” songs he likes is by Daughtry and called “Life after you”.

He always used to say he thought of us when he listened to it back when we were dating and in blissful ignorance of what lay ahead.

He said as long as we had each other and could laugh together, we’d be fine.

As much as I hate to admit it he was right, and I truly don’t make that statement lightly, especially in writing.

We’ll be married for ten years in May and I can honestly say we are as happy now as we were on our wedding day.

Despite that, we’ve faced a lot of hard times together including infertility, ill health, disability and grief.

One of our beautiful triplets has complex needs with all the doctor visits, hospital stays, interventions and operations that go alongside.

Much of our life is absolutely amazing; I love our children, our home, our family and friends yet there really have been some very dark times together where we’ve felt broken.

Much of what has got me through is Ryan, and his often annoying ability to make me laugh in even the toughest of times.

There really is a lot to be said about keeping a positive mindset even during those hard times. Is that always possible?

Of course not!

Sometimes the pain is just too raw that no amount of positivity would get you out of that dark space.

As a special needs parent I have felt that deeply myself and am aware most readers will have too.

We all differ in how we cope and I’ve been in the situation where I have felt anger at people suggesting I “stay positive”, so please bear with me.

Now I can see a bit of improvement in Jacob’s epilepsy and his ability to cope with his world now he is attending a specialised school, I feel I can “step away” a bit and look at things more objectively.

I am making a very conscious effort to adapt my thinking towards a more positive mindset having lived in survival mode for so long now.

I do things like have a “positivity calendar” of inspirational quotes, spend time with my kids, take time for myself and generally try to shift away from “what if?” thought patterns and towards a “one day at a time” mentality.

One of the big hurdles I found was acceptance.

You’ll be coming from your own point of view and experiences, but generally people do choose to be happy.

It isn’t something that will just happen for you or something you can chase.

Obviously you can adjust things in your life to make you happier, but it’s in making the decision to do this that you will find some peace.

For example, a big challenge recently was accepting Jacob now has learning difficulties and needed to move away from his mainstream school to a specialist setting.

My choice was to fight that (which I did, for a bit!) or accept it and make the best of the situation.

The outcome was the same- he needed to be in a specialist school, but my attitude wasn’t and that’s where the shift came.

I’m not a life coach, psychologist, therapist or any sort of expert really.

All I know is in my own experience, life really is much better if you fill it as much as you possibly can with laughter.

This week parents of school age children with additional needs have been split into three camps.

Those whose children have been at school over the recent lockdown period anyway due to being particularly vulnerable or because they have a parent/carer who is a key-worker.

Those who already home school and so have been carrying on as normal (minus the trips, get-togethers etc.) and those whose children have been returning to school for the first time in absolutely ages.

All the Zoom learning has stopped, tuning in to the BBC programmes has come to a halt, even Joe Wicks has hung up his trainers, and operation ‘back to school’ has been put into action!

So how has it been going?

Stories emerging so far show a mixed bag of good, bad and downright ugly, so is there anything more that we can do to help our child to succeed as they return to school?

Many of our additional needs children need loads of preparation and processing time to cope with a big change like this.

After months at home, suddenly finding themselves with a totally different routine, perhaps having to cope with getting up and dressed a bit earlier and then leaving the house for the first time in ages to go to a place full of sensory and social overload can be really, really hard.

So here’s a few resources I’ve found that you might be using already, but if not they may give you some help…

Widgit
There are free resources about returning to school that you can access for free on the Widgit website:
https://www.widgit.com/resources/popular-topics/back-to-school-june/index.htm

Twinkl
There’s a free download on the Twinkl website that helps explain returning to school:
https://www.twinkl.co.uk/resource/bbc-teach-live-lesson-wellbeing-bouncing-back-to-class-activity-booklet-t-lf-2549301
You will also be able to link to other helpful resources.

ReachoutASC
Our friend Lynn McCann at ReachoutASC has provided a wealth of brilliant free downloadable resources here:
https://reachoutasc.com/resources/downloadable-resources/

 
Action for Children
Knowing how to talk things through with children about returning to school can be hard, here’s some easy steps to follow from Action for Children:
https://www.parents.actionforchildren.org.uk/returning-to-school

ParentKind
There’s lots of useful information on the ParentKind website that can help you navigate a path through these difficult times too:
https://www.parentkind.org.uk/News–Blog

Do-IT>
A wide range of useful free downloadable resources can be found on the Do-IT> website, under their rather appropriate heading of ‘Survive, Revive and Thrive’:
https://www.doitprofiler.com/survive-revive-thrive/

And finally…

Autism little Learners
Just love this site, so full of useful stuff and there are some great Social Stories on this link:
https://www.autismlittlelearners.com/search/label/COVID-19 There must be more great resources out there, so do share what you have found helpful and maybe we can add it to this list.

Wishing you all the very best as you continue to support your additional needs child ‘back to school’!

Thinking about starting a new school is an anxious time for any young person.

Add in the fact you are not moving on with your peers and because you find some things harder than others you are going to be educated in a different town, in a different building and with different experiences to all your friends and it’s easy to understand why my autistic daughter is anxious. 

Like all other children about to move on to secondary school she’s worried about new teachers, new subjects, greater expectations and all the transitions from one class to another.

She’s worried about school lunches, changes to routine, not knowing anyone else and how she will even get there and back. 

But her greatest fear of all is will they understand her? 

The usual safety guards of extended transition, lots of meetings and the handover of reports have been heavily interrupted by a pandemic and school closures.

Meeting staff and seeing the new building are mostly being done virtually which doesn’t help her get a feel for what the place will be like, grasp the atmosphere and acclimatise to the smells and noise that will face her every day.

Faces and voices are different onscreen to real life and virtual transition doesn’t allow for her to meet her classmates. 

Will staff understand that and make allowances?

Will they be able to read her facial expressions and respond accordingly when she is unable to speak due to being selective mute?

Will they understand how hard she finds it to raise a hand and communicate to strangers, converse with children she’s never met and understand unwritten rules?

Will they give her the tools needed to enable her to communicate using a white board and pen like her primary or communication cards or will they assume because she is verbal at home that speaking in school should be fine? 

Will they understand when she freezes in fear because she can’t cope with the demands placed upon her or she cries because she was asked to put something in her bag and it doesn’t fit?

Will they understand how painful being asked to put a tie on is or how hard wearing uncomfortable school shoes is? 

She longs to be accepted, included and understood.

It’s what everyone of us wants really but when you are able to communicate, understand social clues and respond as expected, when you can ask for help easily and when you are not overwhelmed by sensory stimuli all around you these things are so much easier. 

She knows she’s different to others her age. She knows she needs more help to navigate and understand the world. She knows she’s autistic and anxious. 

She knows some people don’t even try to understand her and that hurts. 

Will her high school be a place she fits and is welcome or will she once again feel misunderstood and on her own?

All I can do is do my best to prepare her and them and hope for the best.