Keep Your Chin Up

I woke up this morning and went to the bathroom to get myself ready for the day.

As I stood at the mirror brushing my teeth and tying my hair up I read the little card that I had jammed into the mirror frame some 3.5 years ago.

“Keep your chin up and never lose hope because you just don’t know what tomorrow might bring”

This card arrived in one of the many care packages we received in the early days while we were still reeling from Thomas’s difficult start in life and poor prognosis.

When I first read it, for a split second I considered binning it with the packaging it came with. I couldn’t imagine that tomorrow could bring anything other than more of the black hole of despair I was already living in.

But I didn’t, I shoved it into the mirror knowing I would see it every day and hoping that its flowery optimism might rub off on me.

In the early days I mostly ignored it,the optimism just made me angry. But at some point I stopped making an effort to ignore it, and on days where it all felt a bit harder I’d make a point of reading it.

This morning I read it and smiled to myself.

I love that, after so long of living in the moment, I can finally look ahead to tomorrow. And that actually never mind tomorrow, I’m quite happy to be right here, right now.

I’ve come a long way. Those first 6-8 months are a blur, I remember only snippets.

I remember Harrison saying “Mummy is never happy anymore”.

And I remember thinking, “No I’m not kid, I don’t think I’ll ever be happy again.”

It seemed impossible to have had your life snatched from in front of you and to possibly learn to live again. I had resigned myself to endure it. But somewhere along the way things started to change.

The sun started to shine, and it burned away the shadows and cobwebs.

Also, Thomas began to settle a little and we started to see glimpses of his little personality.

And finally, I started to feel that feeling they promise you at birth, the overwhelming love.

It didn’t hit me in the way they promise, it snuck up on me when I wasn’t looking.

And now? Now I am the proud mumma of 3 awesome boys.

Now I have started to rebuild our lives, it looks a little different than before, but the main thing is that it still includes love, happiness, laughter, joy, and hope.

I can hear the sound of my three boys downstairs getting ready for the day, music playing, paw patrol blaring, the blender going.

It’s noisy, it’s chaotic, it’s messy and I still have the odd dark day, but it’s my family and I love who we are.

Who Would Have Believed This A Year Ago?

It’s been quite a year!

As we sat around the meeting table yesterday for yet another ‘Child In Need’ review meeting, it was almost impossible to believe the progress that James has made in the past 12 months.

Stories flowed from social worker’s, school staff, CAMHS team members… all thrilled at how things had changed…

A year ago, our son James (autistic, learning disability, epilepsy), hadn’t left the house for 10 months; not to school, not to the shops, not to church, not to anywhere.

We wondered if he would ever be able to leave the four walls of our home, James’ safe place, again.

Our hearts were breaking as we received less than helpful reminders from Facebook about where we had been as family a year before.

James’ world had changed, seemingly for ever, with the arrival of epilepsy in 2017, causing him to withdraw into his safe place at home.

School had stopped first, then trips out to his favourite places, then going outside at all.  We briefly managed to get him out for a few, short, evening drives, but he soon started to refuse these too.

Even stepping outside of the back door to collect some of his favourite things from a table was really difficult for him.

In May last year I wrote a blog post that described how we were doing as family as we journeyed with James through this difficult time… ‘Additional Needs Parents – Disrupted, Resilient, Vulnerable, Broken, Loving’…

It articulated clearly the way we were all struggling, but that in all of the struggles we were still bound together, in love:

It also references my favourite worship song, Cornerstone, a song that has sustained me and inspired me along this long journey with James: “Christ alone, Cornerstone, weak made strong in the Saviours love.

Through the storm, He is Lord, Lord of all.”  I wrote these words then, and they still hold true for me today…

“It is Christ alone, alive in us and working through us, especially in the storm, that binds the disruption, resilience, vulnerability and brokenness together, and makes something beautiful, and strong, out of it all… Love.”

A year on, and James was downstairs in his classroom at school as we held our review meeting, engaging with the staff and his fellow students as we shared about him, taking part in class activities as we discussed his progress.

James now attends school three days a week, starting with lunch and staying for the afternoon.

He happily heads out for trips to the shops, especially his favourite farm shop, or to the little café at Compton Abbas airfield, where we watch the light aircraft take off and land while we eat cake or millionaire’s shortbread, and drink tea or lemonade.

In June last year, Facebook sent me a reminder from 12-months before of when we had been there last… Pretty much the last time James had been anywhere.

Around then, I wrote this blog post… ‘Parenting  A Child With Additional Needs – It Is Well With My Soul’…  it is tough to read it now…

This was a low point for us all, but even in the middle of that hard time we saw hope for the future, hope through our faith, hope for James.  We didn’t give up on him, and he didn’t give up trying…

One little step followed another, and then, suddenly and amazingly, in August 2018, James was willing and able to head out of the house again…

I wrote this!! ‘These Are A Few Of My Favourite Things – And They Are Back!’

Oh-My-Days!! How amazing it felt to write that… to see James out enjoying life again, exploring his favourite places again, engaging with people again.

Today he is regularly out and about, back out in the world and loving it… and so do we!

The photo for this blog is James and his mum out at Compton Abbas airfield café again a few days ago (with me taking the ‘photo).

If you had told me a year ago that all of this was possible, would I have believed it?

Yes, I think I would; in spite of the evidence to the contrary, in spite of James not having left the house for almost a year.

In spite of the team of professionals telling us that James might take years to get back to where he had been, even if he managed it at all.

We had faith… faith in James, faith in each other, faith in God and his plans for James, for us.  That faith never gave in, never stopped hoping, never stopped believing.

What a difference a year makes, an amazing year, and year of learning, a year of transformation…

This year has taught us many things, and teaches us still, but one thing that may be helpful to parents on a similar journey to ours is to share the words of Winston Churchill; words that we can certainly empathise with…

“Never give in, never, never, never…” 🙂

When a Progressive Condition Starts Progressing

It’s one thing to be told your child has a progressive condition, it’s another thing altogether when suddenly that condition actually starts progressing.

My son was always slow developing, he did everything in his own time.

Firstly, they told me it was global developmental delay, then they added autism, then six months later, after some seizures, they added a genetic condition called Neurofibromatosis Type 1.

He’s since added epilepsy and a growing brain tumour plus all sorts of eye conditions to his list.

I will never forget the first time I googled his genetic condition and read the word ‘progressive’. The fear, anxiety and panic that brought on was awful.

My four-year-old was like a ticking time bomb and I had no idea what his future held.

It didn’t help that he was non-verbal (and still is at ten) so he could not even communicate any new symptoms or pain.

The only consolation I had was that he was, and always will be, completely unaware of his condition and will never understand what progressive means. That protects his mind, though it doesn’t protect mine.

The thing is when you are told you or your child has a progressive condition there are so many unknowns:

When will it progress?

Will it progress?

What should I be looking out for?

Is there any treatment?

Can I stop it progressing?

Why us?

Regardless of this my son started school. He seemed stable. He never complained about any pain (or was he unable to?)

While his development was very very slow, he was making tentative progress in his special needs school.

His speech, however, wasn’t progressing and with eye sight difficulties and complex autism I finally managed to convince a neurologist to arrange an MRI for my son as his genetic condition causes tumours to grow on nerves and I wanted some reassurance that all was well.

I knew MRI’s cost money and I knew that medical staff needed a clear clinical need especially as the only way it could be carried out was via general anaesthetic.

In the end the word ‘progressive’ was the deciding factor in getting that scan.

That scan brought news no-one was expecting.

Isaac had a tumour on his optic nerve as well as complex eye conditions in his other eye meaning he had no sight in one eye and a tumour on the other!

What should have been a routine scan needed repeated every six months, again because of the concerns of a progressive condition.

Since then they have found more and more issues.

The latest scan has brought the worst news to date: my non-verbal ten-year-old has a growing brain tumour that requires a brain tumour biopsy and possibly chemotherapy.

We are now living in a new realm of knowing that my son’s progressive condition is now actually progressing and that’s very difficult and stressful.

When I found out about my son’s NF1 when he was four, he was physically well. He was having mild seizures and that was it.

Now he is on strong anticonvulsant medication twice a day and often still has breakthrough seizures.

He needs brain surgery and invasive and painful treatment to keep him well and yesterday he was measured for a wheelchair.

I don’t know what the future holds. No-one does. He could remain stable now for the rest of his life or…well let’s not go there.

Hearing my son had a progressive condition was heart breaking. Dealing with it progressing is even more heart breaking.


Home Haven

Before becoming a mother, I was one of the most extroverted people I knew. I loved to be out of the house, whether it was for a social gathering or a trip to the grocery store.

My favorite form of self-care was a trip to a busy coffee shop, where I would people watch and hope to stumble into a conversation with a friend or stranger.

When my son was born, I still loved to get out of the house.

I enjoyed showing off my baby and conversations came easily.

When my son was just a few months old, my husband and I became foster and adoptive parents to children who have long lists of diagnoses.

I remember vowing to not become a family who felt that we were prisoners of our home. We committed to pursuing social engagements and outings as our new, unique family.

However, we quickly noticed the stark differences between outings with our biological son and outings with our new additions who happened to have special needs.

Suddenly, it seemed as if we parted crowds whenever we left the house.

People stepped out of our way and turned to stop and stare.

If we were approached, it was so that someone could ask questions, or say one of those, “I could never do what you do” type of phrases that special needs families are all too familiar with. And yet, we still tried.

Not only did we want to continue experiencing the outside world, but we wanted the world to see and get to know just how amazing all of our children are.

But outing after outing, the experiences wore on us.

I tried attending mommy groups and found that my children and I stuck out like a sore thumb.

Trips to the park became incredibly high-stress as I tried to make sure all my children had something to participate in while I guarded them from the rude stares and remarks of other children and parents.

I found that even the times that I left the house by myself could not be enjoyed the way they used to.

It was hurtful to feel that I had to leave my children—the biggest part of myself—at home in order to be accepted or approachable.

The breaking point for me was a trip to the grocery store.

In an attempt to divide and conquer, my husband took five children to look for a few items and I took one of our children who as special needs to grab something on the other side of the store.

Suddenly, a little girl who was probably ten years old and the adult with her began chasing after my daughter and I, yelling about how disgusting and horrible my little girl was.

They followed me yelling for several minutes until I was able to find a security guard.

After that experience, I was changed.

I longed for a world where ignorant minds would be opened to new experiences and kindness.

While I have not given up on that dream, I have also found the freedom to protect my family fiercely.

These days Before we leave the house as a family, my husband and I check with each other and make sure that our hearts are in a place to be protective of our own family while also being willing to graciously teach strangers what life is really about.

If we feel that our family is not in a place to graciously teach and lead by example, we try not to leave the house.

We realize that somedays we just do not have the strength to interact with the outside world, and that is ok.

Our home has become a haven–a place where we can let our guard down and fully enjoy the uniqueness of our family, both in beauty and struggle.

We have found the boldness to let others know when we just need time to ourselves, and have become far less willing to place our children in situations where they will not be enjoyed and adored with open hearts and mind.

If I’m being honest, I do miss the social life, outings, and connections I used to have.

Perhaps someday leaving the house will become a treat once again, but in the meantime, my heart is so grateful for the treasures my haven of a home overflows with.

What a Difference a Year Makes

One of my favourite things to do every day is to check out my “memories” from previous years on this day.

Sometimes the memories are good, sometimes they’re really difficult, and sometimes they’re just random!

I enjoy seeing the disjointed one-sided conversations from 10 years ago, (before Facebook had the reply function!) Being reminded of friendships that are long gone now but were so good in their season.

My eldest recently celebrated his 7th birthday and it is so much fun to see his birthday through the years, how he has grown, how the presents have matured, the cakes become more epic in construction!

I was reminded recently of the day last year where Thomas sat on his own unsupported for the first time.

He was 2.5 years old and the photo was taken at nursery.

He’s sat cross-legged in the garden, clearly concentrating very hard on controlling his dystonia for the handful of seconds it took to take the photo.

When I saw the photo uploaded onto his learning portal I cried.

This was something we didn’t think he’d be able to do, and if he could do this what else could he do?

And this sort of control could open up so much more equipment for him!

I shared it on Facebook and everyone was so excited for him, and I read all these comments back to myself a year later, seeing my own pride there in black and white, and it made me laugh a little.

That was the first and last time Thomas sat unsupported, and I’m not even upset about it.

If you’d told me a year ago that he wouldn’t do it again I’d have been pretty upset.

But today I can look back and see that although his development didn’t go the way I wanted it to on that April day in 2018, he has still come a very long way.

Thomas has learned how to move himself around the floor of his home.

He can now confidently and easily roll from front to back and back to front.

And the real biggy, he has finally found a method of communication that works for him and we’ve made enormous strides in that area.

As an aside, he also enjoyed a prolonged period of good health and weight gain.

I can see he has come forward so much in the last year, I am not in any way disappointed that as yet he has not mastered sitting unsupported.

I know very well that should sitting become important to Thomas he will no doubt find a way to make it work for him.

But also, I have come forward so much in the last year, I have gained new levels of acceptance of Thomas’s disability which allows me to set our sights on more achievable goals and the unsurpassed joy of watching him fulfill them.

Differently Abled, Not Disabled

As a person, I do not consider myself to be particularly sensitive or prone to offence, though I am part of the so-called ‘snowflake’ generation.

But one thing that does grate on me is the stigma that is still around disability.

Yes, Alfie is disabled, but he does not need your pity, and nor do I.

He may not be able to physically do everything that other children can do, but that does not make him any less of a person and does not stop him from going on to do great things.

The future is not set, and he can do anything he wants to.

We recently went to a birthday party for a child who turned 3.

Both Rory and Alfie were invited, but it made me wonder how long that will continue for- how long the invites will be addressed to both of them and for how long Alfie will be included with all of the ‘able-bodied’ children.

Though he may not always be able to join in physically, there is no reason why he cannot be included in fun and activities.

He will understand being excluded, though he has done nothing wrong.

And how can I explain that? What do I say when he asks about Rory being included and not him?

Because that day will come, along with so many other difficult days where Alfie asks questions that we will always struggle to answer.

When he asks questions that we fear and dread, not because the answer is negative, but because it means Alfie is realising that he is different and treated differently.

But there will also come days where Alfie achieves things others cannot.

Whether that is physically or academically, or later on in life in his professional career.

There is no reason why Alfie cannot have a bright and exciting future, just as Rory will.

It may take him longer to do things, or he may have different methods, but we will never hold him back and neither should others.

Take a look at the life of Stephen Hawking- he was a theoretical physicist who during his life achieved things other could only dream of and would never be able to accomplish.

Yet from the age of around 25, he was wheelchair bound and not expected to live much longer.

So why should Alfie be limited by the expectations of society?

Why shouldn’t he dream of a big and exciting future, just like his twin?

Yes, Alfie has a disability, but that does not mean he is unable, he is simply differently abled.

Is Being A Special Needs Parent Worth It?

This question lurks in the heart of every special needs parent; it is kept down, out of sight, but every now and then when we are tired beyond our ability to cope, knocked down by another bit of bad news, yet again clearing up something we hoped we would never have to see again, or trying to remember the last time we just stopped for a few minutes, the question sneaks back out of hiding and yells at us “Is it worth it?!”

Perhaps never before has humanity lived in such a self-centred, self-obsessed, self-serving, narcissistic, selfish society as we do now.

Advertising and marketing media is filled with slogans such as ‘Because you’re worth it!’, ‘It’s all about you!’, and recently that dreadful advert from TUI (formerly Thomson Holidays), where an entourage of lackeys serve the every whim of the main character ‘Putting you at the centre’.

People are now taking their self-obsession a stage further with wedding companies offering the opportunity for you to have a single person wedding; to ‘marry’ yourself… it even has a name; sologamy.

So, what does any of this have to do with a blog post about children with special or additional needs?

Well, parenting is life-changing, it alters everything; the focus of our lives becomes less about ourselves and more about the child we’ve brought into the world.

This is generally (although, sadly, not always) true for all children, but it increases even more for a child with additional needs or disabilities.

The level of care required, the sacrifices that need to be made, the time that needs to be invested, and so much more all increase exponentially.

James is almost 17, however, his additional needs require a level of care that would be typical for a three-year-old.

He cannot be left unsupervised, has no real sense of danger, has a high level of personal care requirements, and there is a great deal of juggling that needs to happen just to get through each day.

In this world, the self-centred self-obsessed advertising and marketing slogans are just irritating white noise; an irrelevance in a situation where they cannot have any place in our lives.

Our focus simply cannot be on ourselves; it is impossible. For us, it has to be on both of our children, but particularly James as his needs are so much greater, however, we wouldn’t have it any other way.

Serving our child, loving our child, self-sacrifice for the benefit of our child, this is the model that, as special needs parents, we follow.

This is a narrative that is more relevant, more inspirational, more aspirational, and more needed in today’s society than the cultural obsession with self that surrounds us.

Regular readers of my blog will know of the challenges that we have faced in the last couple of years with James.

Him not being willing to leave the house, especially in the day and particularly not to school; his diagnosis of epilepsy to add to autism and learning disability.

Things are hard and yet through it all, through all the difficulties and the self-sacrifice, there is the overwhelming natural desire to meet James’ needs, to give him unconditional love, to be there for him, with him, through it all.

And every now and then, we get a wonderful treat!

Like when James was sat with us and was suddenly filled with joy, a huge smile spread across his face, and he excitedly said “Appy!! Appy!!”.

For this almost non-verbal boy this was a wonderful expression of how he was feeling in that moment; how safe, cared for, and loved he felt, and it had us all in bits for the rest of the evening!

All of the sleepless worry-filled nights, all of the challenges and difficulties we face together, all of the hospital appointments, all of the sacrifices that need to be made, all of the times when we can’t do something or go somewhere, even all of the times when we are cleaning up things that we would rather not, all of it melts away when times like this come.

We change the marketing slogan to meet our context; we create a different narrative, it becomes “Because it’s all worth it!”, “Because he’s worth it!”

What about you? Where do you see yourself in this?

Maybe you are a parent or carer of a child with additional needs and ‘get it’ as you are on the same journey?

Or maybe you are a children’s or youth worker and get to support a child or young person with additional needs when they are in your session?

Whatever your context, the counter-cultural message shines through… put your child before yourself, love your child for who they are, be self-sacrificing, serving the needs of your child.

So, let’s continue to be counter-cultural, revolutionary, rejecting the narcissistic, selfish, self-obsessed, self-serving culture that society would have us embrace.

Let’s be better people, to be the people we should be, to love each other, to serve others not ourselves. And let that be the case for the children we care for, whether they are our own or not… “Because they are all worth it!” 

Dear Cerebral Palsy…

I hate you. I hate you so much. You try and rob people’s ability, their chance at normality and independence.

I was first introduced to you when my son was just a year old, but you had already been there from the beginning, we just didn’t know it yet.

The part of the brain that controls coordination, movement and balance had already suffered irreplaceable damage from birth but we weren’t to find this out until much later on.

Those early days that we were supposed to be enjoying the precious time with our baby were spent worrying and wondering what was “wrong” with our child.

We spent hours, days, weeks researching and you kept popping up wherever I searched. It was like you were just screaming out at me. CEREBRAL PALSY.

After we were given the diagnosis, I’m not really sure how I felt.

I felt loss, I felt like I had just started grieving for the life my son wouldn’t have because of you.

From then on, the words “can’t” “won’t” and “will never” were spoken to me at nearly every appointment. The reason? Cerebral palsy. Of course.

But guess what… Cerebral Palsy does NOT control personality, it does NOT control ambition and it does NOT control determination and in fact, I believe it actually fuels these qualities.

I have learned so much since my son’s diagnosis, I have learned that he is in fact very able with some extra help, he can be more independent and he absolutely will be included in anything he wants to.

Cerebral Palsy has robbed him of his physical ability to be able to do a lot of things he should be able to independently.

But we will never give up on fighting against it, my son works so hard at his physiotherapy every day and he still goes to bed smiling every night, he is happy.

His cerebral palsy doesn’t upset him because I’ve never allowed it to stop him doing anything he wants to.

Cerebral Palsy, I hate you but I will never allow you to rob us of our happiness.

How Technology Helps My Boys

One thing you learn (or hopefully you do) pretty early on when it comes to autism, is that everyone on the spectrum is different.

Just as unique as you and I, and anyone else in this world

Being a dad of two autistic boys, they’ve proved that to me time and time again.

Even though they’re both autistic, non-verbal, have sensory challenges, they also couldn’t be more different.

One such difference is how technology has become an essential part of their lives and in completely different ways.

For my eldest son Jude, an iPhone or iPad with YouTube on is his idea of heaven.

For someone who struggles with the stresses of everyday life, and the sensory overload it can bring, his tablet gives him the chance to escape and relax.

From an early age cartoons and music videos seemed to be a great soother for him.

When overwhelmed, or coming down from a meltdown, it would often help.

However, it could also have the reverse effect.

Being non-verbal, and having limited communication skills, Jude would struggle to make it clear what it was he wanted to watch.

Even though he only had a couple of cartoons he’d watch, I’d constantly be having to change back and forth, trying different episodes, as he’d get more and more upset.

Unable to use the remote control, he relied solely on somebody else making a choice and changing it for him over and over.

Then one day we tried a tablet, and whilst it took some time, thanks to the ease of touchscreen technology, and YouTube’s recommended videos, he soon figured out how to use it himself.

He could be in control. He could stop, forward, or skip whatever it was he wanted to watch. It suddenly gave him a huge amount of independence.

When at home, it’s never far from his side.

Even if it’s just kept on, playing music on the other side of the room, knowing it’s there and he can access it when he needs to, massively reduces Jude’s anxiety.

If he gets stressed he knows he can simply pick up the iPad and go to his room, he’ll be able to find and control what it is he watches to help him calm down.

Just knowing he has that option has allowed him (and us) to try different things, go out to more places, knowing that portable jukebox is only seconds away.

For my other son Tommy, whilst he too enjoys YouTube and playing games on a tablet, it has become way much more.

His iPad is now his voice.

Non-verbal like his brother, Tommy has been progressing really well over the last year using PECS.

So much so that we have now moved onto an app called Proloquo2go instead.

With the help of the speech and language team at school, Tommy is now able to create and use simple sentences to request what it is he wants.

Not only that but because the app speaks out loud what it is he’s trying to say, he seems to be much more motivated to use it throughout the day.

He knows he can pick it up, and with the press of a few buttons, he can search for the right words to use to be able to communicate with me.

The reduction in frustration since we’ve been using it has been huge, and I’m sure this is just the beginning in how far his levels of communication are going to develop.

Two brothers, two very different boys, both living happier lives thanks to the wonders of technology!