Undiagnosed But Not Invisible

In that year so much has changed for us and Sam, although he is still officially undiagnosed in that we don’t know *why* this all happened to him, we do have a far clearer view of what changes exist in his brain and how these affect him day to day.

Probably the biggest change, however, is that attitudes seem to be starting to change.

There are still those who think/say that if a child doesn’t have a diagnosis then there’s nothing wrong/it’s due to parenting.

There are people who still seem to think that if you just changed YOUR behaviour then autism would disappear, or that children with ADHD just need to be told firmly that their behaviour is unacceptable and that will magically cure the problem.

For us, Sam’s issues are very visible (he’s in a wheelchair and is tube fed for crying out loud!) so we’ve been spared much of the rubbish our friends are forced to face daily… however, the word is getting out there far more.

Some families are finding that their Consultants actually know about Swan UK, and are able to signpost families to the support offered.

There truly is no more devastating or isolating moment than when a Dr considered a world expert tells you that they have no idea what is wrong with your child, so they can give you no idea of what to expect, or what treatments may be effective… because at that moment they’ve never seen a child quite like yours before.

It’s a hard thing to hear and leaves you feeling completely isolated.

Medical science has moved on at a spectacular pace – we have sequenced the human genome and can identify tiny changes in the DNA; what we can’t always say however, is if those changes are responsible for a child’s disabilities/issues.

We can test for all manner of substances that are present in either too high or too low a concentration, and we can identify children with problems much earlier in many cases.

However, we don’t always know why these changes occur or what they might mean.

For many of our children, the best we can ask for is symptom management.

For some finding out the answers has proven to be a bit like opening Pandora’s Box.

I am eternally grateful to Facebook for allowing us to get in touch with other families in similar situations… those parents are a wealth of knowledge and support.

And it’s not all bad… take a look at these images of my little hero – do they look sad to you?!

We have to remember to see the child first, and the disabilities second, because after all they are just children. x

Do I Really Need a Fitbit..?

In recent years, there have been very humbling moments that we got to witness in our lives, how technology has enabled humanity to reach its full potential.

It almost feels like the efforts of all those struggling to make this technology possible would be in vain, if we don’t take the opportunity for them to enrich our lives.

The Fitbit is a wireless bracelet that captures the daily physical activity of a person, including such things as steps, distance, calories, sleep quality and more.

Fitbit can do this by taking advantage of the accelerometer technology, which monitors progress in the speed of your movement.

To be fair, no specific health claims have been made, but this kind of device is known to improve cardiovascular health, reducing blood pressure.

Think of it as your virtual fitness partner, as it can constantly record your activities even while you sleep.

Unlike other fitness watches, it was designed with style in mind. A narrow band that is not too large, and it fits comfortably on your wrist.

Why Do You Need a Fitbit?

The device is very innovative when combined with a corresponding app on your smartphone. The list of useful features is as follows:

–  You can enter your food intake with caloric value of the particular food item,

– The caloric intake of food during the day can be used to map the calories burned throughout the day, even without exercise.

– Together with the calorie counting base, it also interprets your daily movements such as walking, steps, running, etc.

– Along with the data capture for physical activity, it also records rests throughout the day.

Needless to say, the device is highly efficient for obtaining valuable information about your daily routine, which can be shown on a variety of graphs showing your performance over time.

How Does Fitbit Work?

What if you had a way to track all those steps you climb to work every day, miles you covered on your daily run, the food you eat, and even how well you sleep?

Fitbit has created a way for the user to do all these things and more.

Set Fitness Goals

Fitbit gives you the opportunity to set fitness goals every day.

The Led panel displays on the front of the bracelet light up which shows you your progress in relation to the day’s goals.

With this, you can challenge yourself and be more active

Track Key Metrics

With Fitbit, you can track things such as; steps taken, miles or kilometers covered, calorie burn, and your sleeping habits

Silent Alarm

In addition to monitoring the quality of your sleep, Fitbit has an integrated alarm that gently vibrates to wake you up.


Since the Fitbit is designed to be used during the day and night, its water-resistant design  means there is no point worrying yourself about getting it wet.

Wireless Sync

Following your fitness progress is easy with Fitbit.

The device automatically sends the data to a PC, Mac or iOS device … without cables!

Mobile App

Fitbit has some great free tools you can use to record and track key trends. The mobile app will help you take your workouts to the next level.

Use the app for tracking workouts, scan barcodes of food, route maps, calorie count, listen to music and much more.

Is the Fitbit Flex Right For You?

Fitbit is a great tool for anyone looking for that extra bit of motivation to stay active.

Due to all the useful features described above, you can have your virtual fitness partner and put yourself on the right track for a healthy and happy lifestyle.

Global Developmental Delay

He is 4 years old and still has yet to reach many milestones that, “should”, have been met years ago.

He has congenital disorder of glycosylation and is severely delayed, he is nonverbal and can prop sit for brief periods of time.

To be honest, I rarely think anymore in the terms of where he “should” be but rather in the present time of where he is.

But there are times when his delays sneak up on me and look me right in the eye.

Recently I was cleaning out our toy/therapy room and setting things aside for a yard sale.

This was when our son’s global developmental delay stared me straight in the face.

I had a large box where I was putting rattles and other infant type toys, toys that I would classify as 0-6 months on the development chart.

As I grabbed each one and placed it in the box I realized that many of them our son never even played with.

He may have held some, but most of them he didn’t “play” with the way they were intended.

He didn’t shake them to make music, he didn’t twist them to make a clicking sound, and he didn’t squeeze them to hear the giggle.

I remember purchasing many of them at second-hand stores and thinking this will be the one.

This will be the toy to unlock him. This will be the one that helps it all make sense to him.

I searched for the toy that he would play with. Local thrift stores, Amazon, and suggestions from other parents.

When I say that we could be our own second-hand store I’m not kidding. We have them all.

Soft, hard, noisy, ones that shake, ones that spin, and ones with cute little animal faces. All of them, and yet, nothing.

As much as I wanted to let the tears flow when looking at my box of toys, I decided to change my thinking.

I couldn’t look at the pile and let each one remind me of the things he has yet to accomplish.

Each toy represented my determination.

Every rattle represented my hope.

Every toy portrayed my dreams that I have for our son.

Every single one shows my attitude to never give up.

He may always have the diagnosis of global developmental delay, and he will always have me.

Determined. Hopeful. And never ever giving up.

Is There Ever a Right Time?

I feel so armature and far too close to Zachariah to be making such huge decisions regarding his care when he becomes close to the end of his life.

I mean, what Mother and Father want to speak about such things when their son is only 2 years old, let alone write actual answers down on paper.

It’s a heart-breaking and almost impossible task to do.

Despite this I feel it would be a wise thing to start talking about and get our thoughts and feelings on the table now to try and avoid Tim and me finding out how differently we both feel when it’s too late.

In addition to this, I feel it may be good to get it over and done with, lock it up and only get out when the time comes and leave the professionals to follow the plan leaving Tim and I to be with our Son 100%.

As I write this I hear how bonkers it all sounds, my son is upstairs asleep in bed, (well when I say asleep I mean shouting himself to sleep!) and I am downstairs planning what to do when the worst happens.

But is there ever a right time?

My mind is telling me to plan ahead with a straight head and think logically whereas my heart is telling me to make no plan and just fight in every which way you can to keep him alive when that time comes, and then my Motherly instincts are telling me to allow my son to go when he is ready and hope that it’s as peaceful as possible.

You can see how torn apart I am, my heart is breaking that this is even something we need to be doing.

I just hope that as my husband and I sit down to discuss tonight we naturally sync and make the plan as easily as possible and we can find peace with our decisions, as nothing is ever set in stone anyway, things can always be altered.

One of the things to discuss are the funeral wishes we have, and this is definitely something I want to plan now, close the book and forget about.

As this is something we don’t need to make life or death decisions about.

It is, out of it everything, something we can make positive and special, we can take Zachariah’s personality and make an absolutely heart-breaking day into a day to remember Zachariah for the cheeky, smiley, bubbly boy he is.

Now I really do sound bonkers!

For some of you, this may sound ridiculous, but for families like mine, this is reality, the reality that our sweet, precious boy has a life limiting condition that cannot be taken lightly, but is also something we learn not to dwell on.

Thank You for reading this, it wasn’t easy to write, as I sit here with tears streaming down my face, and I imagine it wasn’t easy to read either.

Please feel free to contact me if you are also going through this process, there may be comfort found speaking with someone who understands.

Much Love xx

My Son Is Not a Lost Cause

It is his favourite ever activity and we have a routine he adores involving a train ride, lift watching (his other major passion) and eating (another serious passion!).

We have it all timed so we arrive just before lunch and eat at a certain place before watching more lifts and heading home.

It is fun, mostly relaxing and a trip we all enjoy.

The only bit I ever worry about is not the challenges of two children with autism, or even the huge gaps between the train and the platforms; no the single most thing I worry about is the general public!

Today sadly showed me why.

As we boarded the train to come home having had a lovely time watching lifts together and enjoying lunch, my son decided he wanted to sit on the opposite side of the train to us.

This is common as he needs space to regulate and as his sight is deteriorating and he has no sight at all in one eye he naturally wants to sit at the only side he can see out of the window.

As he sat down on his own within plain sight of myself I noticed a much older lady smile at him and ask him if he was enjoying his Easter holidays. Gulp.

What do I say when he won’t look at people, can’t speak at all and has no understanding of what he was even asked?

He looks like any other 8 year old so what do I say?

I simply said, ‘he does not understand you sorry. He can’t speak at all and has some difficulties. Thanks for talking to him though.’

Maybe it was what I said, or the fact I seems a little worried or the fact my son was now making his usual noises and flapping; whatever it was I was still not expecting what she said next!

“You really need to pray to Saint Jude you know! He is the patron saint of lost causes!”

I smiled but remained silent. Inside I wanted to scream and cry all at once.

The last two words spun around in my head for the rest of the journey.

Lost causes. Lost causes. Lost causes…

Is that really how some people see my child? Maybe that is why speech therapy have ceased working with him?

Maybe that is why CAMHS discharged him despite him struggling with anxiety, control struggles and self harm?

Perhaps that’s why all his teachers have left after teaching him?

He is 8 and still in nappies. He is 8 and non verbal. He is 8 and has the comprehension of a 14 month old. He is 8 and has the sense of community of a 3 month old.

His diagnosis is comprehensive and life long. He has no sense of danger and little awareness. He can not dress himself or brush his own teeth.

But I can never ever see him, or any child, as a, ‘lost cause’.

He has potential. He has life. He has vibrancy and capacity to grow and learn. He has personality and character.

I will never give up on my child. He may have some difficulties but sadly the general public often have much more difficulties than he does.

How dare anyone, even if well meaning, suggest my precious baby is a, ‘lost cause’.

While he has breath in his body he has life and potential and a future. I only wish more could see that!

Keeping You and Your Little Ones Safe When travelling

Although we’ve travelled on numerous occasions we’ve only had one trip that didn’t result in a wheelchair catastrophe.

And that my friends isn’t great odds.

So what helped us score a completely successful wheelchair damage free trip?  Check out these 7 tips that helped us ensure a safe wheelchair departure and arrival.

1) Take Your Accessories With You

If your child’s wheelchair has any accessories that are removable take them off and board the plane with them.

This means a detachable sunshade, a soft undercarriage storage, a cooling or heating pad, a removable footplate cushion, or a wheelchair rain guard.

Anything that could easily be detachable or come off, take a bag with you and stuff it in there and throw it in carry-on storage.

There is nothing worse than getting to your destination and realizing that some of the pieces of your child’s wheelchair are missing.

And these accessories generally aren’t easy or inexpensive to replace and are generally much needed for your child’s comfort and safety in their wheelchair.

2) Don’t Fold It Down

This tip took me multiple trips to learn.  Even if your child’s wheelchair has the potential to collapse, fold or be broken down into two pieces (the base and the chair)… don’t do it.  I repeat don’t do it.

If you tell the gate attendants that this is as good as it gets and they can’t collapse it in any way – you just increased your wheelchair’s chances of survival by more than 80 percent.

No other luggage will be placed on top of it, they can’t stack or drag it.

While airlines will of course prefer you to fold it or make it compact in any way possible – you are no way obligated to disclose that your child’s wheelchair has that potential or ability.

So leave it just like it is – upright.

3) Discuss Past Damage

Remind the airline and gate attendants that you had past damage experiences and are really hopeful that this time they’ll get it right.

Don’t be shy, casually drop dollar figures like yeah it cost the airlines $8,000 last time to replace the whole thing because you bent the frame.

Make sure they understand the gravity of how precious and how expensive of a piece of equipment your child’s wheelchair really is.

And it’s okay to take slight pleasure in the shock you will see in their faces.

Everyone needs a little reality check now and again about the reality of a special needs family’s circumstances.

Be hopeful, and tell them that you’ve really got your fingers crossed this time that it will remain damage free.

4)  Get a Pre-Board Inspection

Not all airlines do this as standard protocol so make sure if you are flying an airline that doesn’t have a standard inspection of the wheelchair that you ask for one.

This is where the airline attendant will look over the wheelchair and notate any pre-existing damage or problems with the wheelchair so they can document if damage occurred during flight.

Make sure they know the great condition your child’s wheelchair was in prior to trusting them with it.

Generally this results in simple paperwork that you’ll carry with you.

5)  Tag It!
Most airlines are great about tagging wheelchairs at the gate.

They’ll tag it and give you a claim receipt so in case for some reason the wheelchair gets separated from you and/or lost that you have something to try to track it down with.

Some airlines get distracted and will fail to tag it, or in many cases they depend upon you to tag it yourself with tags that simply are available at the counter.

No matter how the airline handles it – just make sure it gets done.

6) Give a Quick 101

Wheelchairs are generally foreign items for airplane and gate staff.  Don’t forget to give them a quick 101 on how your child’s wheelchair works.

Show them the breaks and how to lock and unlock it.

The last thing you want is for them not to know how to drive it or lock the breaks and have it drug up to the gate with a multitude of mishandling damages.

7) Fold it In & Grab Those Tools

If your child’s wheelchair has any swing away laterals or footplates, make sure you fold all features in.

This will help insure that none of those features are bent or are injured during flight.  There is nothing worse than realizing that the airline has bent an accessory that you lack the ability to easily fix.

Likewise make sure you travel with the wheelchair’s Allen Wrench kit so that if you need to make adjustments during travel you can easily do so.

And after you get all those pre-jitter worries set aside about your child’s wheelchair remember to just relax and have a great time getting to and from your destination.

Happy Wheelchair Travels!

We Might Not Have a Medical Degree but We Are Also Experts – Experts in Our Own Kids.

I believe that if we all work together and are ‘on the same page’, offering a consistent approach, it will give us the best chance of a good outcome. I must say, though, that I did not have high hopes; I was afraid that it was just a box-ticking exercise by me to prove that I had at least tried, and I entered the meeting feeling very defensive.

To my great surprise I actually left the meeting feeling very positive. I felt that I’d been not just listened to, but heard.

I felt that constructive suggestions had been made, and that, above all, everyone wanted the same thing – to work together to help Freddie.

You might ask why this should come as a surprise, especially if you are the professional; after all, isn’t that exactly what is supposed to happen? In theory, yes: but from a parent’s point of view, meetings with professionals can often feel like confrontations.

I am not the only parent who feels defensive in the face of professionals.

I was following a thread on Twitter recently in which a teacher asked: ‘Why are parents so adversarial with schools?’ I tweeted the reply: ‘because schools are adversarial with parents’.

He seemed surprised by this viewpoint and asked me to elaborate, so that he could get some idea of what might be done to reduce conflict between parents and teachers.

I said that both parties needed to remember that they should be on the same side – that of the child.

In the past I have approached professionals, looking for assistance with a problem that I have not been successful in tackling by myself, only to find that the meeting turns into a subtle blame-shifting exercise.

We’ve been through several phases of where Freddie has point-blank refused to get ready for school.

No amount or type of rewards has any effect, and physically forcing him to get out of bed, wash and dress is not a long-term option – he is only going to grow bigger; I don’t believe this is an appropriate or healthy way to deal with a child, anyway.

Since I could identify nothing at home that might be exacerbating the problem the next logical step was consider whether there might be something at school that might be at the root of it, because treating the cause has got to be better than just treating the symptoms.

So I asked a professional.

‘You could get up earlier. To give him more time.’ That was the first suggestion.

Please excuse the stony silence while I bite my tongue and try not to say: ‘Now why didn’t I think of that, and haul my sorry backside out of bed at a decent hour instead of festering in my pit until 5.50 am.

After all, it’s well known that a child’s mood and cooperativeness are vastly improved by dragging them out of bed while they are still asleep.’

Perhaps I am just spectacularly unimaginative, but I couldn’t for the life of me see what was to be achieved by giving him enough time to sit there like an adamant and very angry sack of potatoes for three hours instead of two.

It would still end with me trying to force his school uniform onto him while he fought tooth and nail to get it off again.

‘You should give him consequences. He’s old enough to understand that. Have you tried walking him to school if he misses the minibus?’

Of course, I really should try that one.

After all, the LA only gave him a place on the minibus so that I could stay in my pyjamas watching TV instead of taking my child to school.

It had nothing to do with the fact that my son had hypotonia and profoundly hypermobile ankles, and a tendency to ‘flop and drop’ when he gets tired and frustrated, and we live three miles away from the school  — that’s forty minutes walking for a healthy adult!

I could put him in the buggy, I suppose, but then which one of us is suffering the consequence? He would have a nice ride while I jogged along pushing the combined weight of him and that contraption. Yeah, that’d teach me, wouldn’t it, not to be such a rubbish mother.

Was I meant to leave that encounter with the notion that I was a really s*** parent who just needed to pull her socks up? Was it meant to be motivational?

If the above example is typical of the tone that prevails when parents meet with professionals, is it any wonder that so many parents come to meetings on the defensive?

We come expecting to be talked down to and scolded like recalcitrant children. Professionals so often fail to treat parents as equals in the discussion.

Yet we are equals, because we too, in our way, are experts – experts on our child; and the things that we know about our child form a vital piece of the picture that must be fitted together to help each child get the best outcome

A Peek into the Future of an Autistic Child

I wonder what they’ll be doing, and which friends they’ll have. Will they have moved out by now? Or will they be in a relationship?

How they would have managed in their exams, and through puberty and first loves. Will they feel confident enough to talk to me about their problems?  Will we still have a close bond?

Those thoughts run through my head every now again, especially when we’ve hit another birthday and you reminisce about them being babies and how much they’ve grown.

Once a tiny baby, their little head fitting in the palm of your hand and relying on you for love, and care.

And as they grow they rely on you less,  gaining a little bit of independence makes you feel like they’re slipping away, each year a little further, by 7 my son no longer held my hand and by 9 he stopped me walking with him to take him to his classroom.

Gaining confidence, freedom and determination with each passing of each year.

It’s different for my daughter though, she is disabled and is diagnosed with Severe Anxiety, Severe Attention Deficit Hyperactivity Disorder, Microcephaly, Autism and many other things.

I still wonder about her future, but I wonder different things.

I wonder whether she will still be so anxious that she barely leaves the house, and whether she will still be living with me, I wonder if she’s able to sleep at night, without waking 20 times, because her sheet is uncomfortable or her pajamas are itchy.

I wonder whether she would have learnt that if she pulls the covers back over her she wouldn’t get so cold, instead of screaming until someone comes and does this for her.

I wonder if she will have friends, or even a friend. I wonder what her chosen career is and if she is even able to work.

When she grows up, will she still have constant pains in her legs from hypermobility, or will they have improved.

What will she like doing, will she still find comfort in lining things up all around the house or switching the lights on and off all evening?

I wonder if she’s able to live a happy and fulfilled life. Will she be comfortable in the skin she’s in?

Will I still be her full time carer?  I am prepared for that, that for the rest of my life I will be caring for her.

If she improves significantly with all the interventions that are in place then that would be amazing, but I have thought about the future and how she is able to live independently.

I wonder whether my children will have learnt to tolerate each other, or even have a simple conversation.

I wonder whether her communication will improve to more than it being question based as opposed to reciprocal conversations.

Will she still be on medication for ADHD and her significant Sleep difficulties?

I’m just not sure what the future holds for her.

Whatever it brings, I will be there for her, through thick and thin.

I will hold her hand and help her through any problems she may have, just like I would my son and my other daughter, albeit in a different way.

None of my children’s futures are more important than the other, each has its differences, and each path will take them in a different direction, different but not less.

However, one will require a lot more preparation, and time. I am prepared for that.

Do you ever wonder what the future holds for your disabled children? You’re not alone. We’re right here with you.

And no matter what that future holds, you will know that you have loved unconditionally, you have fought like a soldier on the front line, and you never gave up hope.