Reflections from a Type A Mom

In the fifth grade, our class was in the midst of a losing a reading contest, so I read The Hunt for the Red October in three days — all 656 pages.

Pizza party for everyone.

I breezed through high school and college, seeking out challenges wherever I could find them.

Advanced Latin for my language requirement.  Yearbook editor.  Discus and high-jump.  Basketball statistician.  Winter, “Snow Queen”, cabinet.  Church handbell choir. State champion public speaker.  Pit orchestra.  Et cetera, et cetera.

At the time I gave birth, I was establishing a communications department for an international company.

I consider it a gift from my father.

He is the same way and has made many significant contributions with his life.

Our love for learning is a deeply cherished parental-daughter bond.

At the same time, it has sparked ugly worry as a mother myself.

What if my son isn’t… smart?

Logically, intelligently, emotionally I know the answer is that it doesn’t matter.

But for a long time, I kept the question secret because I was so ashamed.

We don’t fully know how my son’s encephalopathy and hydrocephalus will affect his executive functioning and cognitive abilities in life.  He’s only three.  Even still, at this young age, I’ve been hyper-concerned about his skills in vocalizing colors, or knowing animal sounds, or watching him struggle to pull down his pants.

We have had physical therapists, occupational therapists, speech language pathologists, special education teachers, adaptive learning techniques — and about 12 different medical specialists and geneticists.

I secretly seethed inside whenever another mother said to me, “Oh, you watch.  He’ll learn how to walk someday.  He’ll be just fine.”

Those same mothers were engaged in major bragging wars about how exceptional they wanted their own child to be.  Who knew their alphabet first.  Who could scale a bookshelf.  Who was already ice-skating.  Who could build an empire out of Legos.

I sat there politely holding a coffee mug many times as they talked around me.

I didn’t exactly want to be part of the war, yet I was totally resentful about my son about being passively dismissed as an adorable non-threat.

I have witnessed in a clinic lobby as two doctorate-holding parents refused to accept their son’s speech evaluation because it was just a phase, not a characteristic — their son wasn’t “that” kind of kid, they said.  In other words, my kind of kid.

“They’re definitely not the first academic parents to resist,” sighed our pathologist.  I smiled, grimly.

I feared my son would be irrelevant.

Don’t expect too much from that Barbero boy, but whatever he could end up doing, that’s just great.  Good for him.  He’s a cutie.

And then, just before three years old, I had a beautiful awakening.

“He’s smart,” my Dad said one day as we were drinking green tea and watching my son play with trains.

The comment surprised me.  People don’t really call my son smart.  They say he’s cute, or happy, or adorable, or handsome.  But not smart.

“You think so?” I asked.

“Sure!  Look at the way he problem-solves, the way he figures out how to work around challenges with toys or movement.  He’s been that way ever since a baby – watching things people do, figuring out how to get something when he couldn’t walk, knowing what you’re saying even if he can’t talk.  He’s smart in his own way, and I think he happens to be really, really smart.”

I didn’t realize how much I had wanted someone else to say it.

I knew it, I saw it every day.  I truly wasn’t worried that my son wasn’t smart — I was worried that the world wouldn’t see him as smart.

I was worried the world wouldn’t see him.

So I stopped worrying about the world, and I went back to enjoying him.

With my son, I have a whole new excuse to explore the world in a new adventure — to see it through his eyes.  To watch him grow, and learn, and react.

It has also healed me, in a way.  I no longer consume as much as possible — for the first time ever, I set down a book that I was disinterested in and didn’t force myself to finish it.

Now I relish in the experience of discovering an essay or recipe or album that really sparks interest for me.

Instead of seeing it as something to be conquered or checked off a list, it’s now something to be shared  with my husband, my son, my friends and family.

It’s the act of learning that sparks my joy, and it’s my son who has turned me into a true student, not just a do-er.

I couldn’t be prouder of or feel more connected to that bond.

Prognosis vs Reality

When Sam was diagnosed, we thought we would find a medication to stop the seizures and our boy would be just fine.

Possibly have some learning issues due to the meds, but otherwise a normal, healthy little boy.

As things spiralled out of control and it became obvious this was not going to be the happy ending we had prayed for, we started to doubt ourselves.

I remember holding Sam in the middle of the night, just rocking him gently as he slept peacefully in my arms.

I had tears coursing down my face as I was so incredibly terrified that we might lose this precious little bundle before we’d even had the chance to see who he actually was.

There are still moments like that now, even though he’s rather bigger than he was(!), when I just hold him as he sleeps and marvel at how beautiful he is, and at how strong he has become.

Does this look like a sad photo to you?

Me neither.

At this time, Sam was fighting hard against around 100 seizures every single day.

Yes, it was heart-breaking to see, but was it always teary?

Nah. There was also a lot of silliness, giggling and as you can see here some award-winning smiles.

I wanted to write a simple post really, to tell all those Mums who have just been thrown bodily into the world of special needs – it really WILL be OK.

I can’t say what, ‘OK’, will be, but honestly, you’ll be fine.

You’ll be amazed at how much joy this life brings.

Right now, things are too raw and too overwhelming for you to see anything past the next few hours, days… so stop trying.

What you do NOW will change their tomorrow – and it’s not just therapy that’s crucial here.

Love, faith in them, and encouragement goes a very very long way too.

On paper, Sam’s diagnosis is dire; profound global developmental delay, visual impairment, motor skills of a baby a few months old.

Drug resistant epilepsy, life threatening seizures.

Four years ago if I’d known this would be our reality, I’m not sure I’d have been able to hang on; I wasn’t ready to accept it.

It sounds so utterly joyless, dark and a world full of grief at what might have been.

What I could never have known then is the joy that this remarkable child brings to my life, and the lives of everyone he knows.

He can’t yet crawl, but he can sit with very minimal support like a pro!

He recognises himself in a mirror and loves to interact and play – not bad for a child who is registered severely visually impaired!

We don’t see Sam as being profoundly disabled; we see him for who he is.

A cheeky, happy 4 year old who loves school, swimming, and going out for long walks in the surrounding countryside with Mummy, Daddy and his dog.

So, to the Mum of a child newly diagnosed; hang on.

You’ve been granted membership to a club no-one wants to join but now you’re here you’ll be welcomed with open arms and more love and support than you could ever have imagined existed.

Your child will amaze, inspire and astonish you with what they achieve; and you will be blessed with a child who will teach you far more than you will teach them.

You will become a fire breathing dragon when you need to in order to ensure that child gets what they need, and then as quickly become the proudest parent alive because your child has done something that the professionals believe would be impossible.

My Sam recently learned how to hold my hand – now he’ll just reach out and grab my arm simply because he wants me to be near him.

It is the most magical experience.

Be gentle to yourself, don’t expect to be suddenly OK with the knowledge that your child has more challenges than seems fair.

How Mornings Look In MY House…

Wake up to sound of oxygen monitor at 3am.

Roll over to see fellow sleep-deprived parent roll out of bed, peer at monitor in the gloom, decide child is safe (he is snoring softly after all), crawl back into bed.

Places icy cold feet on my legs, illicit shriek… quickly rechecks child, all is still well (snoring).

Idiotic parents cannot contain giggling. Eventually stop giggling and attempt to get back to sleep.

Dog wakes, barks to go out.

Roll out of bed, stub toe on end of bed, grunt, open door to let dog out.

Dog flops onto floor, rolls onto back to present belly for tickles.

Really, Merlin? At 3.30??!

Realise that dog will not go out/settle until after tummy tickles.

Tickle dog’s tummy.

Dog pees on feet.

Dog unceremoniously directed outside for wee.

Dog refuses to come back in.

It’s freezing, think, “Suit yourself.”

Leave door open for dog to return.

Crawl back to bed (we live in a bungalow, so the door in question is our French window, within sight of our bed).

J up at 5.30, little dude still snoring softly.

Sam wakes at 6, seizure hits immediately.

Once recovered, nappy changed, meds given and breakfast sorted.

Kettle on for the all-important morning mug of tea.

Sam complains bitterly at being awake and being dressed.

While attempting to remove air from syringe, 25mls of bright purple (blueberry based) blended diet is fired half way across the room (over child, chair, floor, TV and up curtains).

Mutters obscenities, makes mental note to buy Vanish while wiping food off child/clothes/TV.

Sam deeply unimpressed with this.

Manoeuvre small person out of p-pod and into wheelchair… attempt to discover where, precisely, the straps have disappeared to this time.

Strap Sam into wheelchair, do battle to get hat on him as its sub-zero outside.

Hat lasts less than 2 minutes.

Put hat back on child.

Wait for taxi to arrive, wheel Sam out to meet taxi.

Realise that I am still in attractive Muppets PJ’s and slippers.

Once Sam is in taxi and off to school, hurtle round trying to find clothes while J feeds cats, dog and prepares to take dog out for walk.

Locate clothes.

Attempt to locate hairbrush.

Decide brushed hair overrated.

Scruff hair up with bit of wax to help make it look like designer bed-hair – not only-just-got-up bed-hair.


Attempt to locate matching pair of shoes.

Arrive at work and cherish calming normality for the next few hours.

Get home to happy child who proceeds to tell me all about his day in his own way, cook tea, feed child, give meds, change nappies, deposit sleepy little person into his bed.

Listen to said child singing happily for next hour.

Wonder why I bother putting him to bed at a sensible time…

Collapse into bed exhausted, attempt to sleep while listening to the lovely, reassuring sounds of the little man breathing softly.

Get out of bed to check his SATs monitor is turned on, pause to gaze in wonder and absolute adoration at this wonderful, amazing little man who defies the odds daily.

Remember why it really is absolutely all worth it, chaos and exhaustion included.

Chalk Paint Your Furniture Fabulous!

Transforming a piece of outdated & unloved furniture isn’t as hard as you may think – not only is it cheaper and more personalised to our taste, but it is also incredibly satisfying – after a few attempts you may catch the, ‘bug’, and no unpainted wood will ever be safe again!

From an old chest of drawers you have at home to a wardrobe or chair in a charity shop.

Sourcing furniture is half the fun of it & can be done in the comfort of your own home by trawling through buy & sell pages of websites like Gumtree, Ebay, local Facebook sale sites, Freeads and Preloved, to name a few.

Once you’ve got your hands on something to transform, it’s time to buy some paint and get creative.

Chalk paint has become incredibly popular throughout the past couple of years for up-cycling furniture.

Brands such as Annie Sloan, Rust-Oleum & Authentico have recently taken centre stage when it comes to all things upcycled.

Unlike traditional paints, it doesn’t require any preparation such as sanding, undercoating or priming; it is designed to go on almost any material, paint from wood to plastic or metal; it suitable for internal or external use; it covers easily, dries quickly and helps you achieve a beautiful finish that is perfect for distressing.


Step 1: Make sure the item to be painted is clean & dry as well as removing any hardware, such as handles or hinges that you don’t want to paint.

Step 2: Get painting – this is the enjoyable and rather therapeutic part! As chalk paint is quite forgiving there is no need to be too precise! Depending on the original colour, you may need a couple of coats – you should be able to tell how it’s covering immediately, and thankfully chalk paint dries quite quickly.

Tip: If at any point you need to pause your painting project then just pop the lid back on the paint & wrap the paintbrush in some cling film or a plastic bag to stop it drying out.

Step 3: Once your final coat has dried, put your hardware back on – you could even try replacing handles with new ones which you’ll find in most DIY shops!

‘Distressing’, for that, ‘shabby-Chic’, look.

Step 1: Gently sand the edges with a fine grit sandpaper until you get your desired look.

Step 2: Rub some furniture wax over the piece to seal and gently buff this in with an old rag – this will help protect it against any knocks or spills.

Tip: Focus in the parts of the furniture that would tend to age naturally over time, such as edges and corners.

Your up-cycling project is complete – enjoy!

What I’ve Learnt As A SWAN Parent

At five years old, my son Gabriel still can’t walk or talk and struggles with feeding.

Yet I have no idea why.

Despite a raft of testing taking place over three years he remains undiagnosed. A rare genetic condition is suspected as the unifying cause for his multi-system medical issues that range from minor cardiac abnormalities to growth hormone deficiency.

It can be difficult facing an unknown future where the path your son is taking is literally unchartered. He is writing his own book, a thrilling page turner at times and a bit mundane in places, and all you can do is hope it is one with a happy ending.

He is not alone.  There are 6000 disabled children born every year with a syndrome without a name.

As one of many SWAN mums, here are a few things I have learnt:

Feelings of Isolation are Common

In a recent survey conducted by SWAN UK, 75% of parents said raising a child with an undiagnosed genetic condition was, ‘isolating.’

The words, ‘frustrated’, and, ‘lonely’, also came up a lot as did, “anxiety, low mood and depression”.

There is no shame in feeling like this.

It is a hard journey and one you have to undertake alone.

Friends will find it difficult to understand, no matter how supportive they are.

Even amongst support groups – undiagnosed children are so diverse that quality of life issues that massively affect one might be a blip on the radar for another.

This is why it is important to find families with similar children to not only support each other in the dark times, but to laugh out loud together in the good.

Interestingly, 93% of respondents to the survey said they felt less isolated since joining SWAN UK.

It gets easier. It does.

In the first few years of testing I was a wreck.

I hated everything that was happening to us and would spend many hours crying in the shower (where no one could see me).

The depth of my despair was overwhelming at times.

I was convinced my child was going to die.

How could I deal with that?

Also I didn’t think I had it in me to raise a child with a disability.

Thoughts like; “But he’ll never have a girlfriend” used to consume me.

Then slowly the sand shifted and things got easier.

Life has a habit of chugging back on.

The 20 hospitals appointments a month became 2 or 3.

Therapy sessions are now largely done in school.

Gabriel is just Gabriel and I wouldn’t swap him for the world.

And girlfriends are overrated.

We Must Leave No Stone Unturned

Some days I don’t want a diagnosis. It is nice living in a bubble and thinking the world can never touch you.

That piece of paper with a name for my child’s syndrome will also come with a potentially  frightening prognosis.

The thing is we need to keep pushing to find out what is, “wrong”.

He has two siblings and they have the right to know if it will affect their children.

As Gabriel gets older and understands more he too needs to know what is causing the limitations in his body.

We, his parents, need it too. For closure – so we can keep moving forward.

The reality though is being, ‘undiagnosed’, is not always a temporary stage, the genetic  cause of some conditions may never be known.

Genetics is Not Easily Understood

In some ways life was easier in the testing stage when we could say to people that our child had heart problems.

It is something that people can latch on to that conveys the seriousness of the situation, but still offers promise of medical intervention and hope for the future.

Now that his cardiac issues are stable and we know it is a rare genetic mutation that is causing his delays, the notion of, “What is wrong?” is a lot more vague.

It is hard for me to get my head around genetic arrays and genome testing, let alone try to explain the processes to family and friends.

The best way I suppose is to say that if Gabriel was a book, the first stage of testing was checking to see if whole sentences or paragraphs in his DNA had been copied or deleted.

Now we are looking and testing the the exact order of the letters.

Are you still with me?

No falling asleep at the back!

Access to Support is Harder

With no label, it is often harder to access social care support for your family as your child does not fit easily into a tick box on their forms.

There is also an underlying assumption that your child will catch up when in reality the gap between them and their peers is likely to get larger each year.

The, “maybe he will grow out of it”, comments make you want to rip your teeth out in frustration.

In addition, care can often be spread across a number of hospitals.

We currently access 10 consultants across three hospitals as well as a physiotherapist, dietitian and speech and language therapy (and that is not a lot compared to others).

It is important that care is co-ordinated so, “small stuff”, is not therefore missed.

Lack of diagnosis again can be a barrier to this.

This is why SWAN UK made the theme of this year’s Undiagnosed Children’s Awareness Day, “The Big Ambition”  – that is to ensure every family has the support they need, when they need it.

It is not easy raising children with special needs and one that lives under the shadow of an unknown disorder can bring extra pressures.

But, I will add this: even those children with some of the worst predicted outcomes have surprised the life out of us all.

And they continue to do this every day.

5 Things I Didn’t Know About Undiagnosed Genetic Conditions

In the last 7 years he has undergone many genetic tests for a variety of conditions.

Muscular Dystrophy, Fragile X and Angelman Syndrome are just a few of conditions that have been suggested to us.

But, to date, geneticists have been unable to pinpoint the exact cause of his disabilities.

To help raise awareness of Undiagnosed Children’s Day in the UK which is celebrated on 29th April 2016 I got to thinking about what I knew or more accurately didn’t know about Undiagnosed Genetic Conditions before Daniel was born.

1. That they actually existed.


I didn’t have a clue that there were children (and adults) with very severe disabilities and complex health conditions that did not have a diagnosis for their condition.

So when Daniel was 11 months we were told that he had Global Developmental Delay, Hypermobility and Hypotonia.

It was a while before we understood that these labels were his clinical diagnosis used to describe his difficulties but they didn’t explain WHY he had the difficulties in the first place.

It is thought that about half (50%) of children with learning disabilities and in approximately 60% of children with multiple congenital problems do not have a definitive diagnosis to explain the cause of their difficulties.

2. That a Swan wasn’t just a bird.

In the world of undiagnosed genetic conditions, SWAN stands for syndromes without a name.

Families of children with undiagnosed genetic conditions affectionately refer to their children as swans and often wear clothes or scarves with a swan print, wear swan jewellery or even have swan tattoos to raise awareness of syndromes without a name.

So, the next time you see someone wearing a swan print it might not be because they love swans.

3. That there was an Undiagnosed Community.

A group of parents, siblings and carers spread all over the world united by the fact that their child didn’t have a diagnosis for their disability who supported and helped each other.

In the UK, this support group is managed by SWAN UK which is an initiative of the charity Genetic Alliance.

Children with undiagnosed conditions are on a massive spectrum of physical, learning and medical conditions yet we pull together to listen to each other, to share our experiences, to give virtual (and real) hugs, to give words of advice and encouragement.

4. That a Graduate Swan wasn’t just a really smart bird.

Graduate Swans are children who have received a diagnosis.

With the advancements in genetic testing through projects such as Deciphering Developmental Disorders and 100,000 genomes, more and more children are receiving a diagnosis.

This means that for some families the wait to get a diagnosis can be less than a year – during that year the Undiagnosed Community through SWAN UK is there to provide support and can continue to provide support even after a diagnosis.

It is important to remember that many families will wait years for a diagnosis and some families may never receive a diagnosis.

5. How difficult it was to diagnosis a genetic condition.

I thought ‘we’ knew a lot about the human body.

I was wrong. It turns out we know very little.

We each have between 20-25,000 genes but we’re still not sure what each of these genes do.

Everyday geneticists are seeing changes in genes that have never been seen before.

This means they wouldn’t be part of the usual diagnostic testing processes.

Sometimes tests show up a change that is not responsible for the condition, sometimes there are so many changes that it can be hard to pick out the one causing the problem.

In Daniel’s case, he matched almost all the symptoms of Angelman Syndrome yet the genetic testing returned negative – so this was a red herring for his geneticist.

Sometimes a change is found that may account for certain elements of the child’s condition but not others so this may suggest that there is another gene change that hasn’t been identified yet.

Sometimes what appears to be a diagnosis can just lead to even more unanswered questions.

So we’re seven years in to our undiagnosed journey with Daniel, I’ve got to grips with terms like microarray, gene mutation and karyotype.

I’ve googled more syndromes than I care to mention and our geneticist greets us like a family member.

I hope that I can now support families just starting their undiagnosed journey with gentle words of encouragement and support while continuing to raise awareness of the fact that undiagnosed condition exist.

Our World Is One of Chaos, Uncertainty and… Gratitude.

Recent events have mainly comprised of a few hospital admissions, some chest infections, seizure activity, hideous feeding issues, pH studies, EEGs, complaints to PALs chasing tests, and the usual physio, speech and language, dietician reviews, pediatric consultations, TAC meetings, seating clinics, equipment reviews occupational therapy, sensory support etc.

In addition to this, I can’t help but feel my mental health has taken a turn for the worst and I have been feverishly trying to address this issue with all of the fight that is left inside me.

I have been almost tenacious in my approach to make things better and it seems I take one step forwards and two steps back.

My health visitor has been urging me to get CBT (cognitive behavioural therapy) and the stubborn part of me has refused for months.

A few weeks ago, I finally made that appointment with the GP for a referral.

You see, my panic attacks are back. A few years ago I would have had the naïve view that panic attacks aren’t a real thing, or that perhaps the person is just attention seeking.

How wrong I was.

I was in the car with family and I felt my chest get tighter and tighter, I actually thought I was having a heart attack. I tried to steady and slow my breathing and even opened the window to let some air in.

No good. I began to hyperventilate like never before, I went dizzy, I felt sick, I thought I was dying.

Why did this happen?

It happened because we tried to have a nice family day out. Amy does NOT like days out.

She hates her wheelchair, she hates it all.

She doesn’t want to observe the world around her and becomes very dystonic and angry.

The more she cries the worse her reflux gets and she panics herself choking.

Everywhere we go we take a giant bag of toys and an iPad with us along with all the other luggage she requires and even this is rarely enough.

As we walked around the grounds of this beautiful place I couldn’t help but notice all of the other children her age running around, climbing up trees, trying out their new scooters, pointing out things that interest them.

This is foreign to me.

In spite of my best efforts, I simply cannot get her on board with these trips.

When we sat at the coffee shop I let her have her iPad and she was finally appeased (appeased. Not happy. Ugh).

I had suppressed my feelings with all of my might, seeing those other children and comparing it to how my child was crying the whole way around.

I tried to suppress the children sitting around us eating food orally, watching people walk by, finding inanimate objects fun to play with.

This is not our life. We are on a different path. Breathe.

All was well.

I had managed to drink my coffee and eat my soup.


Until I took the brakes off the wheelchair and pushed it and the iPad cascaded in slow motion onto the concrete floor beneath it.

This is our third iPad.

Why, oh why, did we not get a screen protector?

The last iPad enjoyed a trip down a dual carriageway on the roof of the car and was never found.

We don’t do very well with these sort of things.

A culmination of feeding pump issues, Amy’s constant crying, and then, the icing on the cake; the iPad breaking.

This is what set me off. The panic attack lasted about ten minutes and afterwards I cried hysterically until I could barely move.

Since then my anxiety medication has increased and I have started CBT.

I try to be mindful, I try meditation, I try to exercise (the overeating is still in full force but I am working on it!).

I feel that therapy isn’t the option for some of us.

I feel like surgery, housing issues, leaving work to be a carer, feeding issues, constant appointments, paperwork, chasing appointments, failing at being a good friend and watching relationships dwindle is taking a huge toll on me.

I recognise a lot of the same things happening with my fellow special needs parent friends.

Our world is one of chaos and uncertainty, but I must remind myself:

You could never accuse my life of not being interesting or slow paced.

There is always something happening.

You don’t get much time to dwell because you are so busy doing the next thing.

Prepping meds, distracting your child into thinking the standing frame is great, ordering tube feed supplies, rearranging appointments etc.

You learn to appreciate the lesser things in life.

Amy has recently mastered getting on and off her tummy whilst rolling.

Something I didn’t know we would ever see.

I also appreciate simple things like a quiet walk with the dog on respite day – something I could easily have taken for granted a while ago.

I try and remain in the moment; admire the flowers, smile at strangers, meet lots of other nice dogs etc.

Some relationships thrive under pressure and you also meet people like you.

I have met some truly incredible people on this journey, and I have also kept quite a few of my best friends I’ve known since school or college.

Recently I had a friend round for drinks one evening and we belly laughed in a way that I haven’t in such a long time.

Sometimes my life confuses people not on this path or makes them feel awkward, but I’m learning to adapt and so are they.

We all benefit from this.

You learn greater empathy.

I genuinely used to think panic attacks were a bit made up for attention.

NOT true.

I feel terrible that I ever thought that.

Anxiety, chronic stress and panic attacks are a very real thing.

I now feel so much more solidarity with fellow sufferers and hope that one day when I am stronger I will find a job to help others get better.

I guess it’s a bit like when people think autism is just, “bad behaviour”… these people have no idea because it isn’t part of their life and they don’t understand it.

You can never assume anything, and you can never judge someone as you can never fully know or understand their situation.

I know what has made me how I am and I am very open about it.

Trying to change is hard.

You value life so much more.

I know so many parents whose children are regular admissions into hospital.

I know parents who have lived in hospital for weeks, months and sometimes even years.

You just don’t know what others are facing.

When you walk past me alone in the street you may just think I am some girl on her way to meet friends or something.

Actually, I am the special needs mum hurrying to the shops to buy guinea pig food and enjoying getting out of the house for a few minutes.

I have a new understanding of carers and their role and the pressures they face.

I met a lady today who cares for her husband who has Alzheimer’s.

She does an amazing job, she had a lovely smile and so did he.

Smile in the face of adversity.

Life can be amazing.

Seeing them like that made me happy.

I know that they face a lot of challenges, behind closed doors there may be a lot of tears but I could see her love for him a mile off and that’s beautiful.

Can I end this piece with a little advice?

If you know someone whose life has become a little more complicated than typically expected… offer help!

For me personally, someone bringing me a pint of milk when I am struggling to get the shops… this means the world and actually makes life so much easier.

For me, a trip to the shops is a panic knowing Amy hates going out, I’m assembling the wheelchair, transferring the feeding pump and whatever else for the sake of a simple transaction.

Today for example has heightened my stress levels intensely.

I was in the car driving Amy to respite.

She was screaming, the feeding pump alarm was going off, the dog was crying, and I was stuck in terrible traffic. 

I was doing breathing exercises trying to calm myself down.

I then notice my phone had been ringing non stop/ it was Amy’s’ OT saying they had measured her for the wrong seat in seating clinic and that we would have to attend again.

I begrudgingly arranged another appointment and as I got out of the car and I dropped my phone.

It smashed to bits.

I am almost calm now – almost.

I am trying hard at the moment to be there for my friends when their kids are in hospital… take them for brews, have a rant together, have a laugh etc.

Amy’s respite hours are soon to increase and she is also due to start nursery.

I am hoping that for me this will be a turning point.

I will have more time to get things done and also time for me which will then mean I have a lot more energy for Amy.

She’s pretty full on 100% of the time but if you sing the right song or get out the right toy… that smile makes life the best thing ever.

Thank you for reading, I wish you plenty of sleep, coffee and lovely relationships.

I am now going to try and have a little nap before collecting Amy from respite.

Peace out my friends.

Raising A Child With Special Needs: Autism – Our Bubble.

The show is portraying the mother as quite a selfish character, she cares too much about what the world will think of her, and not the needs of her son. Therefore, delaying possible interventions that could help him.

The grandfather is quite old fashioned, he thinks there’s a cure somewhere and if Joe wasn’t given his own way – he wouldn’t be the way he is..  

Don’t get me wrong, I’ve enjoyed the show so far, but it’s a whole different world to what *we* live with autism.

I been asked in the past, “Would you change him? If you could..?” 

And honestly, my answer a year ago would probably of been, “Yes”. 

I wasn’t in a good place soon after Aj’s diagnosis of, ‘severe’, autism. 

Endless meltdowns lasting anything up to 3 hours used to reduce me to tears, daily.

He’d hurt himself, biting/scratching..

It was hard. Very, very, hard. 

With a non verbal child with autism and cerebral palsy, you have to play the guessing game. 

Are you hungry? Tired? In pain?

How could I ever understand a child who didn’t speak?

But now when I’m asked? No. 

No, I wouldn’t change him for the world.

But what I do say is that I *would* change the world, for him.

I’d change others. So that they could see and understand the beauty of being different. 

(Because who really wants to be the same as everyone else?!)

Myself and my son are in a much better place now than we were a year ago.

We’ve learnt each others ways and built routines.

I’ve learnt how much something as simple as bubbles, his iPad and favourite blanket can change a situation from being on the verge of the mother of all overwhelmed meltdowns, to him, and me..

Being in our happy place.

Our bubble.

No distractions, no questions, no judgement..

Just us. 

The calm after or even sometimes before the storm! (cliche, I know!!)

So why change him? When he’s happy?

He doesn’t understand what a cruel and scary world we live in. 

He doesn’t have to worry about his future, about the awful things happening in the world around him.. 

He’s happy.. In his perfect, bubble filled, upside down, spinning round, non stop world..

I can’t change him, and I’ve realised now, I wouldn’t want to change him, so i enjoy it with him – at his pace..

Autism isn’t the end of the world.

It’s a new world.

A more colourful, brighter, louder and faster world.. 

You’ve just got to look at it from a different angle.. 

Sunny side up..side down.. 

When Equipment Arrives and Emotions Run High

I’m pretty sure however that I’m going to resent this equipment’s presence considerably for a little while.

Just like I did with the wheelchair before it, I used to want to cry every time I looked at the thing, but with time came acceptance… and now, I actually kind of like Sam’s wheelchair.

Its funky, with its lime green and black covers, and seeing how happy and comfy my boy is in it definitely helps with accepting it as part of life.

In fairness, I dreaded going home on the day the hoist arrived, I felt so incredibly sad at the knowledge it was there.

And yet, when I arrived at home, it was absolutely fine.

I’m actually pretty impressed with the hoist – it’s a lot smaller than I expected and, okay, its grey and industrial looking (nothing that a spot of glue and a few sparkly pompoms can’t rectify) but not actually as ugly as I’d built it up to be in my mind.

And then I saw Sam use it for the first time and I promise you, I have not laughed so hard in years!

Sam just hung there, chilling happily in his sling with a silly smile on his face…

He absolutely LOVES IT.

And, for me, that was the clincher – my boy is happy, therefore I am happy.

I do, however, think it needs to be rather prettier/less clinical looking….

Pass the pompoms someone…