The Great Clear Out

Not because it’s particular taxing but it is difficult, and that is going through Sam’s toys and deciding which to keep and which to pass on to the next owner.

It’s a typical job that every parent has to do, usually just before Christmas and/or birthdays, but for me it hurts.

Sam’s toys are mostly in perfect, “as new”, condition. Because they ARE new condition.

His disabilities have meant that by the time he was physically/visually able to use baby toys, he had outgrown them.

He’s now a 6 year old, with the mind of a 6 year old but the physical abilities of a 6 month old. He has pretty much every baby toy going… and he is BORED by them.

But as the years go on it gets harder to find suitable presents for him, things that he can play with, that are as close to being ability-appropriate as possible.

He adores the minions, but while he thinks his talking/farting minion is utterly brilliant, he can’t work it himself.

And going through all those beautiful, colourful toys that have never or barely been used… it opens old wounds, reminding me of the life my baby should have had if it weren’t for a quirk of fate. Well, genetics.

But there are ways to make things easier for him to enjoy his toys like any other boy.

Recently, I was introduced to a charity called the medical engineering resource unit (MERU).

They design and supply equipment especially for disabled children, but they also offer a service to adapt suitable toys to allow a child to use a switch to activate them.

After a short time furiously reading the website, I fired off an email asking how much it would be to adapt some toys in time for the little chaps birthday… turns out, these wonderful people do it free of charge, asking a mere £5 to cover postage.

Within minutes I’d disappeared into that massive pile of toys and located a few that would be suitable – two small party lights (a police siren one and a multi-coloured disco ball), a Scout toy he’s never even had out of the box, and the beloved minion toy.

They were packed and off to MERU within hours; and within the week they were back.

Sam hasn’t quite managed to use the switches unaided, yet.

But seeing his little face as he realises that HE has made the toy do something is absolutely wonderful…

And it goes a long way to helping to heal old wounds, and to give my boy a life he enjoys.

Comfee Seat

We researched it.

And we talked some more about it.

It was never going to be an easy process; emotionally or financially.

Acknowledging your child needs more support when sitting and accepting that; is a very difficult process.

Finances when you’re a parent can be a struggle, when you’re a parent of a child with physically disabilities, I assure you, finances can become even more of a struggle.

When it comes to getting a seat made to suit your child’s needs and his potential needs where does anyone start?

We struggled with companies and their understanding of what getting a chair like this meant to us.

We struggles to get funding for the chair as 3,000 euro was something we simply couldn’t afford.

After a few meetings with the powers that be, it was decided that Ethan would be granted the funding for his new chair and even a new wheelchair.

This for us, was a huge relief to say the least.

It’s not like buying a chair that sits nicely in your well decorated room.

It takes far more than us, Ethan’s parents, to make a decision on what chair would suit his needs best.

That’s a hard thing to realise.

This was not us buying a new chair for our son, this was us needing help buying a chair for our son, needing a professional to help us purchase the correct seat.

It didn’t feel like shopping either ; it felt more like looking at Hunter Syndrome (the condition Ethan has) right in the eye and saying ‘ OK , OK you’re winning, let us have the chair and keep our son comfortable’

We had an occupational therapist (OT) arrange all the consultations with the makers of the chair.

He looked at every site we had bookmarked, done all the research and came back with what he felt would best suit Ethan’s current needs and his potential future needs.

He went above and beyond, to be honest.

The rep for the company came by our house.

With him he bought all kinds of chairs including the one we were most interested in.

He sat with us while we discussed Ethan’s current needs and possible future needs.

He was patient, even while Ethan kicked and screamed.

He measured Ethan and assured us he would drop a sample chair off for Ethan to use while we decided if this was the chair for Ethan.

The seat is called a Comfee Seat and is made by James Leckey Design.

The rep along with the OT both made this part of the process easy and quick; they both were clearly in their right careers.

Ethan loved it.

He sat in it for the majority of the day.

The following day we added the table top, where for the first time in months he messily feed himself some yoghurt.

Over this past week, we have made some suggestions to the OT in order to ensure Ethan’s seat is as perfect as we can get it for him.

Nothing we suggested was ‘too much’ or ‘impossible’, we were told that the company were happy to add whatever or take away whatever we felt Ethan needed.

We are looking forward to getting Ethan’s Comfee seat made to spec for him.

We can’t wait to see how Ethan reacts to his very own Comfee seat. Judging by how content he seems with the sample chair, we have high hopes as to how content he will be when his chair arrives.

Ethan seems happier in it.

Ethan seems more relaxed in it.

His favourite part of the seat seems to be the leg rest; something we knew he would enjoy.

Us?

We are just trying to get used to Ethan needing the chair and doing our best to make sure he is comfortable in it, but we are very thankful for great OT’s and very honest approachable reps from companies like James Leckey Design.

Ahhhhhh! Someone’s Coming to Visit!

The night before:

Ah…tomorrow.

Let’s see what we have to face.

What??

Seriously?

How did I forget about that?

Meeting… OK…

I can do this…

Where is it again…?

Yikes!

Seriously?

In MY house! That can’t be right. Let’s check again! No…this cannot be happening!

It’s tomorrow, woman!

Chill.

It’ll be fine.

It’s not like your living room looks like an earthquake just happened in the middle of Toys R Us or anything!

Oops…I think it does actually.

It’s late.

I’ll worry about that visit in the morning.

The cleaning, the notes…it can wait.

Yawn!

Through the night:

Wait let’s think.

Who is that person again?

Ah yes I remember now!

What is it they do..? Let me remember.. Ah, yes, got it now.

Brain go to sleep!

So they are coming at ten.

Cool. Plenty time.

Kids up, dressed, breakfast, school run.

Yip, it’ll all be fine.

Stop brain! Go to sleep.

Tuesday tomorrow.

Yes, definitely the right date then.

Yes, I remember them phoning now two weeks ago and putting it in the diary.

I ought to have remembered.

Seemed fine at the time.

But then Johnny was sick last week.

That’ll be why I forgot.

Actually maybe I should check on Johnny. Yes think I will do that.

Brain please be quiet and let me sleep!

Actually now I’m up I may as well put the washing machine on.

Ah, I forgot to wash that mug. May as well do that now.

Don’t want professionals seeing dirty mugs now do we.

Ahhhhh…look at the time – 1:45am!!!

I better try sleeping.

Don’t want to have bags under my eyes when they arrive tomorrow!

Whatever would they think then?

Morning:

6 Am. What? That time already!?

Kids wake up!

Don’t you know someone is coming to the house today!!

Get up, make your bed and make sure you don’t miss the loo when you pee boys!

Did you hear me now? Someone’s coming to see us! Help!

No…don’t put yesterday’s’ school shirt on son! Someone’s coming to the house, don’t you know.?!

You need to look smart at school today! Straighten your tie.

Actually, let’s dig out your blazer!

Someone is coming to talk to me today and they might want to know you have your blazer on.

I am certain that will be on their agenda.

No way can you have toast this morning kids! Seriously it will make the house smell of warm bread. We can’t have that you know!

Do you have to make your packed lunch today? Have you forgotten someone is coming at ten today!

I can’t have my kitchen worktop looking like we use it now! Pft! Bleach it after you finish ok!

Bute kids! Have a nice day! I know it is early! You’ll be fine. Walk slow! There’s someone coming in two hours and I need to wash my hair and get make up on you know. Be good!

Right, coffee, I need coffee.

No! No time for that.

Hoover out, duster out, toys picked up. Air freshener…where is that thing now! I can smell children…distinct smell of kids here and can’t be having that.

Flowers…maybe I should go get some fresh flowers…have I got time?

Wipes? Where did I put them?

Got to scrub this couch for all it’s worth. Someone is going to sit on that and it has to be spotless.

Windowsill polished. Curtains hoovered (wow that made more dust! Help!).

Front outside steps…maybe I ought to brush those?

Sip of coffee. Luke warm – yuk.

Load dishwasher. Turn off washing machine. Can’t have them hearing that. Whatever might they think of us?

Fluff the cushions, mop the hall, sip of cold coffee. Rearrange the books on the shelf. Wash down the internal doors, scrub the banister in the stairs, match the shoes in the entrance hall.

I need a pee.

Aghhhhh the bathroom! I forgot about the bathroom!

Fresh towels! Scrub the toilet, clean the bath…mop the floor, spray something, anything! Have I got time to wash windows do you reckon?

Ring ring. Do I answer that? Maybe it’s the schools? What if it is them ringing to say they are not coming?

‘Hi,’

‘Great to hear from you too Auntie Jeanie! Yes long time I know but emmm…yes so sorry to hear about that.., emmm…no never too busy for you auntie…but…sorry someone at my door. Need to go!’

Knock knock!

‘Hi, do come in! So sorry about the mess! I thought it best you just see how it always is you know! Do you want a tea or coffee…?

(Please don’t say yes!! It’s Aldi’s own and I think the kids used all the milk for breakfast.)

Breathe…woman…breathe.

Have a seat. No, wasn’t worried about you coming at all.

Act normal. PLEASE act normal!

When Even the Specialists Don’t Know

Most days Sam’s status as a child who is undiagnosed just doesn’t bother me.

After all, he’s a happy little chap and we know how to help manage the seizures and other manifestations of his condition.

We decided long ago that we wouldn’t put the little dude through any more tests unless it was to find a better treatment/therapy plan for him.

It’s a choice we have never regretted – he has enough labels already, and we’d rather enjoy our time with him than be constantly searching for, “The Answer.”

But recently, that undiagnosed bit is a massive pain in the butt, because we’re never quite sure if x, y or z is just one of those things or if it’s a sign of something we should be more concerned about.

Take his chest for example. All small children get colds.

Many get chest infections and pretty much every under-10 year old I know currently has a snotty nose together with coughing and sneezing. It’s the end of term, they are utterly shattered.

But for Sam, it’s never quite that simple. At New Year he was rushed to hospital with a chest infection … a month or so later and we were back with the same worries about his chest.

It looks like his right lung isn’t inflating properly, however the X-rays are clear(ish).

He has us and the doctors baffled, yet again.

There is no doubt that his SATs are fine, however as a Doctor commented, something is definitely going on…. But what?

Because we don’t know enough about what’s going on with the little man this now means a referral to a respiratory consultant, a second look at what meds he’s on and whether he’s allergic to something or if he’s aspirating.

We don’t know if changes on his x-ray show damage from the illness at New Year or if it’s damage from when he was tiny and so desperately ill with pneumonia.

It’s exhausting, emotionally, because every time he gets a cold I find myself watching him like a hawk and praying that he manages to recover and that we don’t end up back in hospital.

I’m sure that eventually I’ll relax again, but the not-knowing is proving to be rather trying presently.

When your Child is Terrified of Being on Red

You would think she hates school, but she doesn’t.

She loves the routine, the learning, playing with her best friend and getting a new reading book every week.

She has no problem with her attitude, her behaviour or her academic work.

She is helpful, polite and friendly.

Yet she is terrified of the traffic light behaviour management chart her school uses.

She lives in fear of being, ‘on red’.

She takes longer than others to hang her coat up, ‘just right’, to make sure her shoes are on the right feet and to not push into the classroom.

She checks and double checks every morning that she has sharp pencils with her as she is scared to ask to even sharpen a pencil. She panics if she has not done her homework, ‘quite right’.

All of this is because she is so scared of the consequences of being ‘on red’.

My daughter has autism and anxiety. She struggles to understand that if someone is upset with you one day that this is not a permanent state of affairs.

She is over empathetic and becomes internally very upset for other children when they move from green to amber or red.

The first things she says to me at 3 o’clock every day is who was not on green that day. She asks me if their mummy will be sad with them and if they will be crying.

At the end of each term her school have a party for all the children who have remained on green every day that term.

The party lasts less than an hour but she lives in absolute fear she will somehow not get to go.

It is awful to watch her so scared to even breathe in case a teacher moves her from one colour to another.

She worries about the rules constantly and gets confused when one day a child is moved down a colour for talking while the teacher is talking yet another day a different child is moved down for not completing work.

She is desperately trying to work out in her head all the different reasons why someone could change colour on the chart and as these change she becomes more and more scared that she could one day inadvertently find herself in trouble.

For her the traffic light behaviour management is like a nightmare waiting to happen. It taunts her on the wall terrifying her daily.

She is scared to speak, make a mistake or even become too excited. In other words she is scared to be a child in case that breaks a rule and she goes down to amber or red.

For so many children with autism, or anxiety, these charts can do more harm than good. My daughter tells me every week of children crying because their colour changed for different reasons.

Her class is full of tender, eager to please 7 and 8 year olds who ought to be more concerned with Barbie dolls and football stickers than they should with what colour they are on a school wall.

I reassure my daughter daily that she is pleasing me, I am delighted with her and we all make mistakes.

I explain as much as I can that it is OK to not be perfect.

But while everyday at school her chair faces that terrifying chart her anxiety will be sky high.

She, like so many other children, is scared to be a child. She is scared to relax in case that puts her on red.

I can’t wait for the summer holidays where she can be herself and know she is loved unconditionally and accepted and she has no fear of being on that dreaded ‘red’.

Red on traffic lights signals, ‘stop’.

Perhaps schools should, ‘stop’, too and realise that for some children a traffic lights behaviour chart makes them more anxious not just for them but for all the rest of the class too.

The Judgement of Mothers: When Breast Isn’t Best

I have no problem with any mother who breastfeeds her baby in public.

There is one thing that I wish these women wouldn’t get out in public, though:

their judgey-faces when they see a mother bottle-feeding.

Firstly, they are assuming that what is in the bottle is formula.

Secondly, they are making assumptions about the reasons why that mother is bottle-feeding.

I would not argue with the fact that breast milk provides the optimum nutrition for (most) newborn human babies; but somewhere along the way the ardent supporters of the ‘Breast is Best’ campaign have moved away from simply encouraging as many women as possible to breastfeed and pushing for the provision of adequate support for breastfeeding mothers, towards encouraging the judgement and vilification of those who bottle-feed.

Expectant and new mothers are presented with information that magnifies the risks associated with bottle-feeding in the developed world.

It is suggested to them that if they do not breastfeed, their babies will become deficient in certain nutrients which could adversely affect childhood development: advice which completely ignores the fact that formula is supplemented with these nutrients – a bottle-feeding mum is not giving her baby half-a-pint of pasteurised straight out of the fridge, she is using a product engineered to replicate human milk as closely as possible.

I have even come across the suggestion that there may be a link between bottle-feeding and autism.

There is NO scientific evidence to back this up, it’s just scaremongering.

Young mums are bombarded with messages that imply that if they do not breastfeed then they do not want, or are not prepared, to do the best for their child, that they will be letting their child down.

This is no exaggeration. Increasingly, people get their information online, and this is where the ‘breast v. bottle’ debate gets particularly vicious.

The backlash against anyone who dares to try to advocate for bottle-feeding mothers is the most savage, especially if you dare to utter the phrase ‘fed is best’:

‘Non-breastfeeding mothers are selfish. It’s not about you anymore once a baby comes along.’

‘Fed is not best, fed is the minimum. You might as well congratulate a mother on managing to not kill her baby as give her a pat on the back for bottle-feeding.’

I’ve come across dozens of quotes like these online. I’ve even seen formula-feeding described in terms of legalised neglect. Wow.

The more reasonable online articles often suggest that bottle-feeders do not want to hear the health messages about breast-feeding due to guilt about their own ‘failure’ to breast-feed.

By attributing guilt as a motive they validate the idea that bottle-feeding mothers should feel guilty.

Can you imagine the response if anyone tried to make breastfeeding mothers feel guilty about trotting back off to work, breast pump in briefcase, before their babies were weaned, instead of staying at home to ‘look after them properly’?

We’d be told to get out of the dark ages – this is the twenty-first century, accept that mothers have a right and a need to return to work (which indeed they do).

Well, I would say this to the breast-feeding bullies: ‘Come out of the dark ages – this is the twenty-first century, mothers have a right and sometimes a need to bottle-feed.

But the guilt argument does at least acknowledge that many try breast before bottle.

Not quite hard enough, though, apparently, because, as we are often informed a few lines further down the article, only a very small proportion of women are physiologically unable to breastfeed (about 2%).

All we really needed to do was persevere and get some better support.

It’s as if complete inability to lactate were the only valid reason for bottle-feeding. But it isn’t.

For some mothers and babies no amount of support or perseverance would facilitate breast-feeding: because some babies are unable to breast-feed.

That’s right. For diverse medical reasons some babies cannot breast-feed.

Either they cannot suckle effectively (if at all), or they cannot obtain enough calories from breast milk. I know this because it’s something I have personal experience of.

Yes, I know it is sometimes possible to breast-feed a baby with Down’s Syndrome. I was bombarded with that message too. Sometimes it is possible, but not always.

Not that any judgey-faced, hashtag ‘keeponboobin’ mum witnessing me bottle-feeding my baby in a coffee shop would have been able to tell that he had Down’s (unless she came and stared at us rudely for a very long time).

She certainly would not have been able to see the heart defect that meant he quickly became breathless and exhausted, or the problems with his blood that had the same effect.

She would not have known the effect that hypotonia has on the facial muscles used in suckling.

She would not have been aware that being able to satisfy his hunger by sucking on a fast-flow teat, snuggled in his mummy’s arms, was a step up from having mummy poke her hands through the doors of an incubator to administer EBM by naso-gastric tube.

She could not be expected to know how that ‘selfish’ mother had set an alarm to wake her every third hour through the night so that she could express the milk she poured into that tube.

How she continued to do that even once he came home from the hospital, even though he had to be fed every three hours, and took an hour and a half to drink the minimum amount necessary for his wellbeing; leaving only an hour and a half in which she could pump milk for the next feed, do everything else she needed to do to look after her two other children, and to eat, or sleep, herself.

Since there was no convenient dial on his forehead showing energy use per hour, she could be forgiven for not realising how high his calorie needs were in those early days, just to perform the basic functions of life, never mind to grow.

How, despite the endless 24/7 cycle of feeding, pumping, feeding, he continued to lose weight hand over fist, until the paediatrician said enough was enough, there was no way this baby would ever get enough calories from breast milk, he needed to have a prescription-only high-calorie formula if he was to have any chance of thriving.

Ms. Hashtag Keeponboobin would most likely have assumed that I had my own selfish reasons for closing my ears to the health messages about breast-feeding.

Little did she know that I had heard those messages loud and clear, about how much harm I would do to my baby if I allowed him to have formula.

In her self-righteousness there is no way she could form a picture in her mind of the day after our visit to the paediatrician, when this useless mother, having failed her poorly baby at the first hurdle, kissed him for what she believed would be the last time, then pushed him into his father’s arms and ran out of the door, determined to be under the wheels of the first heavy vehicle that came down the road.

Luckily there was hardly any traffic about that day, probably because the weather was appalling.

I was retrieved before I could come to any harm, and eventually persuaded that lack of a mother would be far more detrimental to my child than formula milk.

I would challenge any woman who dared to say in my presence ‘fed is NOT best, fed is the merely the minimal standard’ to stand at the sink scrubbing bottles until her fingers bled and there were painful cracks across her knuckles that wouldn’t heal.

Believe me, nonchalantly sticking your baby on your tit while you watch Eastenders, slurping a cup of tea, seems decidedly minimalistic compared to the work I had to do to ensure my child’s wellbeing.

The truth is that in the developed world in the twenty-first century, bottle-feeding is a perfectly safe alternative to breast-feeding. And sometimes a necessary one.

My son is eight now, and so was weaned a long time ago, but the emotions associated with those early days are still raw.

I don’t want any other mother to ever be made to feel the way I was made to feel.

So, breastfeeding advocates, before you bash out that condemnatory comment or sanctimonious blog post, stop and think – there is more than one reason why a baby may be bottle-fed.

It isn’t always a lifestyle choice, it isn’t always a choice. If you see a woman bottle-feeding in public, before you give her that look, or pass some snidey remark, remember, you don’t have all the facts.

With your nose stuck so far in the air it’s unlikely you could tell a medically-fragile baby from a Chihuahua in a handbag, so if you feel inclined to view that mother with a critical eye, take your judgey-face off to the nearest mirror and have a good, long, look at yourself, and at the real reasons why you feel the need to be so judgemental.

Woods and Trees

But some days it really does. It grates.

I am so sick and tired of hearing ‘wait and see’, or that doctors don’t know if a particular symptom is part of his condition and not to worry or whether it’s a sign of deterioration, secondary issues or something more sinister.

It is both frustrating and frightening.

I give you exhibit A: one child, worrying and constant cough, snotty, sneezing. Horrendous secretions.

We have fielded questions about our lifestyles (smokers in the family?), our pets (how many/what sort/ how often do you clean…. really wasn’t impressed by that one), right down to what washing powder we use.

He is a child, medically complex, and not feeling too well… but is it a cold, aspiration, pneumonia or a sign that something else is going on that needs to be monitored?

Ahem. Back to exhibit A, currently wiping snot down my left arm (with a remarkable amount of control for a boy with low muscle tone).

He has had a lot of the above symptoms for much of the past 2 years, his medical team have questioned whether he is aspirating during seizures, leading to a chronic cough; infection has been checked for on chest x-rays, a little irritation shows in the right lung, and antibiotics are usually given (despite protest) as he’s at such high risk of pneumonia.

And yet the symptoms persisted.

The day to day snot-dribbliness/cough were different, he’d go weeks without symptoms then they’d return, no worse than before but no better either.

It disturbed his sleep, making him irritable and fed up.

Ever heard the phrase ‘can’t see the wood for the trees’?

In this case the answer was indeed staring us in the face… or more specifically, blowing in the wind…. Sam has hay fever, to be specific he is affected mostly by tree pollen.

The connection was only made a couple of weeks ago, on a particularly lovely morning in early spring when I woke up looking like I’d been punched my eyes were so puffy.

A furious bout of sneezing ensued, and as I miserably reached for the tissues and made a mental note to buy anti-histamine tablets I noticed my little chap wiping his nose and sneezing for England, and it was suddenly so *obvious*.

Woods and trees.

A quick visit to the pharmacy, some anti-histamine and within 4hrs the little man was the happiest he’s been for ages.

His persistent, worry-some cough completely gone.

I still can’t believe it took us so long to work it out but for now that mystery at least is solved!

The Electric Wheelchair

It was also heart-breaking.

It was hard to see my son in it when only months prior he was whizzing around similar to a pint sized cyclone; wrecking anything in his path.

I didn’t appreciate that then, but now, now I’d give anything to see him do his, ‘cyclone’, impression again.

Hunter syndrome promised it would take his ability to walk; but we just weren’t ready; honestly, can anyone be?

Alas, hunter syndrome always keeps us on our toes – always teaching, always ensuring we don’t get too comfortable or too stable with the life we lead.

After getting used to the world as a wheelchair pusher, (that sounds funny, but I don’t really know how else to refer to myself), I had to accept that some places are just, ‘no go areas’, simply because my son now requires a chair to get out into the community.

It wasn’t easy but I learned ways around some of that by using slightly different methods to get where we needed to be.

(We tend to carry the chair down steep steps, or help Ethan out of it while my middle son runs across the field with it onto the path and comes back to help walk Ethan — no one steals a wheelchair folks!)

I thought that was hard.

I thought that was one of the hardest part of using a wheelchair.

I was wrong.

Today I pushed Ethan around our estate, checking for slanted paths, dips in the footpath and corresponding slanted paths on the opposite side of the road.

Up until now I’ve been able to turn the chair and get it down off a steep curb.

In a few short months I won’t have that option.

Ethan is getting an electric wheelchair; which has huge benefits, not only for Ethan’s comfort and safety but also for my already worn and torn back but with it comes an even bigger issue, one I overlooked when pushing a manual wheelchair.

I need dips, low curbs or slants whatever you want to call them.

I need them on both sides of the road.

I need to be able to get into our local park, which with Ethan’s manual chair takes ten minutes as I’ve to walk to a certain part of the park but with the electric one, today I discovered I’ve to walk the whole way around, which will take us over 20 minutes.

The park by foot, is less than five minutes away.

This is just in our estate.

This is just one thing I’ve noticed today.

I’m panicking about taking Ethan and his electric chair into the ‘real’ world.

It’s 2017–

I don’t understand why dips in the paths don’t correspond with the opposite path across the road.

I don’t understand why there are steps and not ramps into parks.

I don’t understand why I’ve to walk the whole way around and back with my kids in order to go to a park which is on our doorstep.

This is something I did see when we first got Ethan’s manual wheelchair; but as I became more comfortable with it, I eventually, didn’t need to look for the dips in the paths.

With an electric wheelchair the dips in the path are vital.

There is a man I see.

A local man.

I see him quite a lot at our local shop.

He too uses an electric wheelchair.

I’ve been looking out for him, with no luck thus far.

I want to ask him, how he finds the access around our estate.

How he manages the paths.

I only ever see him at the shop but my guess is he uses the roads. I’ve walked around the estate there really isn’t any other option, other than the road itself.

I’ve a toddler too.

A toddler, who thinks he’s far older and wiser than he actually is. He has, like most toddlers, selective hearing.

I cannot imagine walking along the road with him and my middle son who gets distracted every few minutes by a story he wants to share with me or something he forgot to tell regarding a story he was previously telling me.

Confused? Yes me too. He confuses me, a lot.

Then there’s Ethan.

Ethan loves nothing more than hitting things or people that pass him. I do worry what he could potentially do to a passing cyclist .

(I am dead serious, Ethan finds it relaxing to try to grab a cyclist, it’s normally his brother but when it’s not, it does make for  quite an uncomfortable conversation )

I am painting a humorous picture here but the truth of it is, that these are all real things I have to manage daily when out and about but soon, soon Ethan will have his much needed electric chair.

And that is just our estate.

And yes, like with most things in life, until it affects you, you simply don’t see it. I am no different from other people, I didn’t even notice these dips or lack of, until I needed them.

But shouldn’t the architect of such estates spot these kind of issues before these places are built?

Or must it always be those who live it having to fight to change it?

I will be contacting my local city council after I’ve done a full walk of the estate while using Ethan’s manual chair.

Whole 30 for the Special Needs Parent

When it comes to food there are a host of issues, problems and challenges that come along with that for a special needs parent.

The universal theme is we simply don’t really have the time to adequately take care of ourselves, which includes our diet.

You’ll hear countless people preach, “You have to make time for yourself.”  This is not that blog.

I’m neither here to scold you or tell you how you need to treat yourself better.

It goes without saying we know we come last, and you know what?  We’re okay with that, because we know our children need and deserve to come first.

But in the back of our minds, especially as our children grow and get bigger, we have this little imaginary birdie that sits on our shoulder that says you’re not getting any younger and you’ve got to give your body a little tender loving care in order to go the distance for your child with special needs.

For some we’re inspired to dust off the elliptical and treadmill that has sat in the basement for over ten years that you contemplated selling in a garage sale.

For others it means trying to balance a better diet because you know there is no way you have extra time to exercise beyond lifting our children’s heavy adapted medical equipment.

No matter what route we decide to take towards preserving and bettering our bodies for the sake of our special needs children the point is we’re all exploring our options.

The really great thing about social media is that it often puts things in your field of vision that otherwise wouldn’t be there.

I don’t make new year’s resolutions, so my personal interest in self-preservation and health had nothing to do with the turn of a new year.

Perhaps an unwanted birthday milestone was headed my way that made me realize that I needed to start giving thought to things I really hadn’t before.

My strength, my continued endurance, both my physical and mental health – as special needs parenting can take its toll on both.

I was seeking clarity in my thoughts; calmness in the continual special needs storms, peace, comfort, and personal empowerment.

I wanted to start to attempt to achieve my personal physical best for my child.

This had nothing to do with being overweight or underweight, or measuring myself up against the hottest twenty something in a magazine.  Just being the best me.

Like anyone I am sure I could have stood to lose five to ten pounds of lingering baby weight (who are really kidding?.. I mean stress weight) but that that wasn’t at all my primary reason for searching out ways to find my personal physical best that I could be.

As I was touring through social media some long time friends had started a new diet plan called Whole 30.

Thanks Tim and Sarah… (as you deserve honorable mention).

I was intrigued.  Tim and Sarah were making these Facebook live videos.  I was reeled in with how happy and healthy they were looking.  In fact, they kind of glowed and I’m not even exaggerating.

They documented their entire 30 days – they made it appear not completely easy but absolutely doable.

And it looked like a diet that a special needs mom with a heavy load on her shoulders could easily do. And let’s face it. We all need easy or at least easier…

I bought the book and researched the rules.  There were lots of guidelines and for a brief second I thought this could be the impossible mission to be successful at.

But then I remembered that we’re full of beating the odds in families like ours.  A diet plan wouldn’t be any different.

In the beginning you might be a lot like me.  You might think it’s cost prohibitive, or you might think clean eating is going to be complicated and time consuming to plan menus and grocery shop for, you might be worried that you’ll be a raging lunatic without your chocolate and sugar in your coffee.

But after you get all those things out of your head, you’ll realize that even the most time-deprived special needs parent can do it.

So what is Whole 30 exactly?  It’s a diet plan that excludes potentially inflammatory foods and beverages from your diet.

This means no sugars or sweeteners, alcohol, grains, legumes, dairy, processed foods and beverages, baked goods, and junk foods that we all love to swipe off the shelves in pre-packaged containers.

It is eating three clean meals a day with simply as the name suggests; whole foods. Ingredients such as fresh berries and fruit, eggs, vegetables, and meat proteins, and approved nuts and oils and ghee.

In the beginning the big picture feels a lot more complicated than it turns out to be. You’ll quickly find that finding ways to eat a bit simpler isn’t as hard as you dreamed it would be.

The hardest part for me was probably condiments and coping with the fact that I’d have to give up creamer in my coffee.

But, I quickly found creative Whole 30 approved ways around that with different products that had never been on my field of vision before like grain free granola, NutPods, Red Barn almond milk and last but not least Tessamae’s line of amazing condiments.

Now in the beginning perhaps a few more dollars went to replacing things like traditional Heinz ketchup in the refrigerator and dumping all those sugar cubes in the trash…

but I had faith that I was headed towards an improved me that would be healthier and stronger to go the distance so that I could take care of my child with special needs for as long as humanly possible.

Thirty-days goes by so quickly. The first few days admittedly were not a bowl of cherries. I still craved things.

I still wanted a piece of my child’s Valentine’s Day candy, I still wanted my Starbucks indulgent coffee and ached for a cherry danish and a Lamar’s chocolate donut.

But my body and brain started to forget what I thought I was missing and after a full week I no longer wished or wanted any of it, even if it was within arm’s reach.

I started to notice I slept better, when my child was sleeping I was able to sleep.  Something, I haven’t been able to do in maybe years.

After he fell asleep even for brief moments of time throughout the night I would stay up contemplating all that could go wrong if I so much as blinked in the night, or going over all the day’s prior special needs difficulties and problems that I was unable to fix.

I noticed my skin get brighter, my dark under eye circles were starting to diminish, I felt like I actually had more energy, and I was able to manage those special needs roller coaster moods a tad easier.

Of course the tears still happen, as they will for most all special needs parents, it was easier to come out of those tears for an equal amount of smiles.

My aches and pains were significantly less, and my muscles felt as if they rebounded slightly faster from all that special needs lifting. And at the end of thirty days I had extra bonus of an eleven pound weight loss.

While my physical appearance didn’t likely look tremendously different since weight loss wasn’t the primary focus, I felt different.  I felt better.

It was as if I had detoxed all the bad foods and habits from my system.

After thirty days the decision is really yours to decide what foods you felt best eliminating from your diet.

You can chose to continue on, adapt to a more Paleo style way of eating, or re-introduce things like sugars and dairy again should you chose.

For me, I’ve found while I can handle the occasional treat, that my body now completely rejects most of what I gave up for thirty days.

And I feel sluggish both inside and out if I try to go back to bad eating habits.

But whether you chose to give Whole 30 a try for yourself or chose a different food plan that you feel is a better fit – the truth of the matter is food has a lot to do with our personal health so that we can continue to be strong in all the ways we need to be for our children with special needs.

So do some light research for yourself, find a food plan or diet that you think best matches your needs and lifestyle, try something new and different even if just for 30 days to see if you notice any changes in how you feel.

You may be pleasantly surprised at what a small change in diet can do.