Mismatched Socks and Expectations

Birth is incredible, bringing a life into the world is exhausting but without a doubt my greatest achievement to date.

But for many parents, it isn’t a happy time – we’re told our baby isn’t healthy, may not live long, or will have life-long care needs.

I thought I knew what overwhelming grief felt like, until that moment.

In the early days it was impossible to think further ahead than a day or two.

7 years on, life is good.

Different, but no less fabulous for it.

For your amusement, dear Reader, here are five of my observations from 7 years as a SN Mum;

  1. Making plans is futile

For much of Sam’s first few years it was a guarantee that every bank holiday we would end up in hospital. He just KNEW.

  1. Attitude is everything

No-one expects you to be positive all the time.

There is a lot to be said however for taking a deep breath and accepting what can’t be changed while having the courage to change what can be.

  1. Matching socks and expectations

Some days I feel organised and ready for anything. Most days however, I am impressed if my shoes match. In the early days with Sam I worried that people would guess from my appearance that I didn’t have it together. Now as long as I turn up clean, dressed and not smelling, I count it as a win.

  1. Find your Tribe

Find the people that ‘get’ you.

They may not be SN parents themselves, but you’ll know when you find them.

Without my beautiful boy, I wouldn’t have met some of my closest friends.

Not all of them are parents, but each one knows and accepts us.

All of us.

  1. Choose your battles

Parenting is hard.

There are always battles to be fought, however in the SN world pick those battles carefully.

Some are essential (access to services/equipment for example); others less so.

You have finite energy reserves, don’t waste them on things that really don’t matter.

Above all else, I’ve learnt that I don’t know it all, I am allowed to screw things up and that some days it’s OK to scream and cry because quite frankly, knowing that I will most likely outlive my son is devastating.

But he is here, now, and life is for living. And coffee should be considered an essential food group in its own right.

Back To School Time Again

It’s that time of year again when us parents are busy getting the children’s school uniforms together, making sure they have all the pens and pencils required and that their shoes and coats are right for running around in the playground playing tag.

It’s also that time of year, when the weeks of no routine have really taken a toll on my autistic son.

He is all over the place, he is taking himself away into his dark den to calm down, he is taking himself away to watch baby TV to relax, he is hitting out and having meltdowns at the smallest of things.

He is anxious and twirling his hair and banging his head on walls.

We are all ready for the school routine.

However, if you parent a child with autism you will realise that yes, the lack of routine in the summer holidays is awful as you watch your child not being able to cope, however, going back to school and going back into routine can be a challenge in itself.

New teachers, new classrooms, maybe even new pupils.

School will generally be the same building and yet the routine my son left in July will be so different to the one he is going back to in September.

This summer holidays we have really tried to prepare my son for venturing back into a new school year and new routine.

To try and relax him and calm his anxiety around the fact his safe school environment is changing and the first few weeks while he is settling into a new routine will not be easy for him.

Before the school shut for the summer holidays the children had a “transition week” where they get to see their new teachers and new classroom various times of the day for a week.

We could also get to see and talk to the new teacher about any concerns.

After last year we realised that it would probably be brilliant to get a photo book done.

So the teacher very graciously took pictures of our son at different places; at his new desk, where his coat will be hung, the new toilets he will use, him sitting where his quiet area will be, but most importantly him with his new teacher.

This has meant that all holidays we have been able to discuss going back to school, telling him where he will put things and ease his anxiety a little.

We have also been very careful around getting his uniform.

We always buy 3 pairs of shoes, in 3 different sizes, so that when his feet grow he can have the same shoe.

He knows they are new as they feel new, however he knows that they are as close to the same shoe as I can possibly get.

We also haven’t brought him any new uniform.

He will be going back to school in the uniform he wore at the end of term.

He feels comfortable in that uniform and he knows how it feels and smells.

He doesn’t understand why he needs a new jumper when his old one still fits, and therefore we don’t buy him new jumpers.

We have learnt from last year where he got most anxious and have tried to adapt and prepare him this year.

However, we do know he will still get anxious, he will still feel uncomfortable for the first few weeks while he is settling into his new routine.

So we will make sure his dark den is ready for when he gets home, we will make sure his weighted blanket is around and we will send him to school with his fidget bag ready.

When that first day of school hits I hope he will be as comfortable as possible.

That’s what all parents really want, isn’t it?

Dear Epilepsy..

Dear Epilepsy,

Unfortunately, you and I have been acquainted for far too long.

From the time of my first memories, I remember my ability to recite seizure protocol as the sister of a brother who battled hard with you.

From friendships during my school days, to working as a respite provider, to employment at a center that served individuals with special needs, to becoming a special education teacher, and now as a mom to multiple children who wear the diagnostic label with your name on it, I have stood witness to more seizures than I can count.

While part of me has grown used to your cruel grip on the ones I love, I will never become comfortable with your dark presence.

I may calmly stand by a convulsing child, simultaneously switching between speaking comfort and listing off instructions for those nearby, but one more piece of my heart splinters each and every time you rear your ugly head.

While I may seem brave, informed, and capable on the outside, my inside screams, “IT’S NOT FAIR!”

How dare you wreak such havoc on these precious bodies.

How dare you rob individuals and families of their outings and escapes.

How dare you steal away several days’ worth (or more) of wellness—sometimes in a matter of seconds.

How dare you extinguish normalcy beneath the weight of fear and unknown.

I hate you. I hate you so much.

But you know what?

You. Won’t. Win.

With every seizure, while part of me breaks, my will grows stronger.

You have changed me and wounded me, but you have also caused me to stand taller, roar louder, and charge ahead more bravely in search of answers, relief, and healing for the ones I love.

Because of you, I am constantly researching–learning the wonders of our bodies, medicine, nutrition, and science.

You remind me each and every day that quitting is not an option.

I will keep fighting for healing and freedom.

You have broken me and forced me to my knees, but that is where the grace of God has met me, lifted me, and whispered, “You have not lost.”

You have humbled me, teaching me that life is more fragile than I once believed.

You have taught me to press on in the dark and dance a little extra in the light.

Your despised presence in my life has forced me to be mighty when I didn’t know I could be and to treasure the beauty of the mundane I might have otherwise missed.

Because of you, my children who do not have epilepsy are more compassionate, more aware, and more educated than any other toddlers I know.

I hate you.

But I appreciate the lessons I have learned in spite of you.

I will not quit.

You have not won.

Whether my dear ones are free from you on this side of heaven or not, know that you are not the victor.

As much as I wish the case was otherwise, I’m sure we will see each other again soon.

When we do, know that, while you may seem to succeed for a short time, we will fight back.

The story of each and every person you clench is so much greater than the chapters you attempt to hijack.

There is much you are capable of stealing, but there is so much more you are not.

Where you leave ashes, beauty will rise.

Where you usher in chaos, peace will take over.

The preciousness of humanity and life itself is not up for debate and cannot be taken or undermined by you.

Try as you might, you will never truly triumph.

Until we meet again and with upmost sincerity,


A Trampoline and So Much More..

We have had a trampoline in our backyard for about two years.

The kids had been begging us for one for ages. but seemed like such a huge splurge, and I was afraid that once the novelty had worn off, it would sit idle and do nothing but gather the leaves from the trees that surround our backyard.

We bought it primarily as a source of exercise; a means for the kids to get their energy out, but it has become so much more than that.

When people see our backyard, they see a trampoline; a plaything for the kids, but in reality, it is the best sensory tool we could have picked for our daughter, without even meaning to do so.

Our daughter Lilly has always loved to bounce and jump.

Before she could walk, she would constantly bounce in her excersaucer.

She was two and a half when her new brother arrived, and she would climb into his bouncy seat and become agitated when we tried to explain that it was for the baby, and not big girls like her.

She would bounce on the beds, the sofa, chairs; anything that had a little bit of spring to it.

Our sofa cushions were more often on the floor than not after she discovered that she could make a pile and jump in it.

Since she was diagnosed with Autism, I have learned more about why she seeks out this type of stimulation and what it provides for her.

When she jumps up and down, her body receives proprioceptive input and vestibular motion feedback, which helps her with spacial awareness in regards to her limbs and her body’s response as she jumps.

Bouncing is a way of stimming for Lilly.

Some people with autism may flap their hands or wiggle their fingers repeatedly; Lilly bounces.

She will hop up and down when she gets excited, and instead of stomping a foot when she is angry, she jumps so that both feet come down hard on the floor.

When she jumps on the trampoline and her sensory needs are met, she becomes calmer; even if she wasn’t agitated before she went on the trampoline, she would come off looking and acting much more relaxed.

The trampoline is worth every penny we spent on it.

It has been well loved, and despite my fears that it would be ditched after a few weeks, there is not a day it does not get used.

One of the many things I love about it is that it has given Lilly some independence in managing her emotions.

We have avoided a complete meltdown on several occasions because she would run out to the trampoline and bounce until she was calmer without having to be prompted, which is huge in our world.

The American Academy of Orthopedic Surgeons recommends that trampolines not be used by children under six years of age, which I didn’t know until way after we bought the trampoline.

All but one of our kids was over six when we got the trampoline, but we set some firm rules, and when the smaller kids were on there they were always closely supervised.

One thing I would recommend, should you choose to get a trampoline, is to get one with a net.

I’m pretty sure we have avoided many trips to the emergency room just because of the trampoline net.

My kids can catch some serious air when they get going!

Also, pay attention to the weight limit- it’s there for a reason!

If your child is very young but you think they may benefit from a trampoline for sensory reasons, there are smaller indoor options that are specifically geared towards children.

There are many indoor play spaces that have trampolines as well, just check ahead of time regarding requirements to do with height, weight and most important, safety.

Accessible Holidays

This week we are visiting friends in the gloriously beautiful Brecon Beacons; between us we have two disabled adults, four SN children, one (occasionally two) wheelchairs, and are in general quite a tricky bunch to please!

Going anywhere as a group is, however, simple – as long as our destination is wheelchair accessible and has suitable toileting facilities for a wheelchair user with negligible independent mobility….!

One such place is Garwnant Visitor Centre.

Located just north of Merthyr Tydfil, the centre is easy to find and is sited amongst glorious woodland in the Brecon Beacons national park.

On the recommendation of our aforementioned friends, we all met up at the centre on a gloriously hot day; not only is it free to visit – always a bonus during the long summer holidays with kids – it also has more than ample parking (including plenty of disabled parking too!)

The main attraction for most children is the play area, very well equipped with swings (including a bird’s nest swing), rope climbing frame, stepping stones… and a lovely café with easy access for wheelchairs.

Given that the area is not just stunningly beautiful but also very hilly, having such a place fully catering for wheelchair users was brilliant.

Best of all, this attraction boasts a very good size Changing Places loo.

I can’t even begin to say how valuable this resource is for families like ours – Sam is now 7 years old, tall for his age and unable to support his own weight making lifting him both painful and difficult.

Having access to a simple ceiling mounted hoist and an adult-sized changing bench makes his personal care not only easier and safer but far more dignified for the little chap.

For those not interested in the play area, there are a number of beautiful walks through the surrounding woodland, following two trails.

While the first trail was fully wheelchair accessible, the second was slightly less so, one section in particular being steep and gravelly so hard to push the chair up, however the menfolk bravely persisted and conquered.

Along the walks there are wooden sculptures of animals etc to seek out and identify, and the reward for all this walking was the delicious ice cream back at the visitor centre.

Quite apart from the stunning surroundings, ease of access and friendly welcome, having a changing places facility on hand even at a relatively small attraction such as this made all the difference.

Well done Garwnant, and thank you.

Starting School – A New Chapter

“It’ll get easier when she starts nursery.”

“It’ll get easier when you get the mobility car.”

“It’ll be easier when she’s adjusted to her meds.”

Do you ever feel like you’re always waiting for things to get easier?

The school holidays have had me run ragged.

Trying to juggle managing the house in conjunction with a very bossy little 4-year-old around has proven harder this year than the previous.

She is much bigger now and with that her movements carry much more weight.

She’s stronger and more determined for independence.

The problem with this battle for control is that unfortunately she is still unable to do anything for herself and relies on me (or whoever is with her) to act as her arms and legs for her.

I keep thinking about how things will be when she starts school this September.

Initially I was excited by the prospect of trying to return to work.

But then the reality sets in that it would have to be at a school as how else would I get care for her in the school holidays?

Even if I got a job in a school, what about when she has her jejunostomy surgery?

What if she gets unwell and I’m unable to attend work for a long time?

Am I just putting too much pressure on myself?

It would be so nice sometimes to just have a “normal” life sometimes… you know, the life I took for granted before.

The life where whatever problems you encounter during your shift you get to clock out and go home and rest and forget until the next shift.

Then I thought about how fast these 4 years have gone.

In some ways it goes really slow… but also flies by.

I look at pictures and I think of everything we’ve achieved together, everything she’s overcome and all of the skills she has learned.

She isn’t my baby anymore.

She is an actual little girl.

I worry about how she will cope in school for such a long day, with so much going on.

I worry how she will feel about going on the transport bus without, “mummy FM”, singing to her and making her special car playlists.

I worry about if she thinks I’ve abandoned her and if she feels lonely.

The thing I worry most about is her going away from me for all that time and not knowing what’s been happening.

I know you get a book telling you what they’ve been up to.

But I won’t hear those words from her mouth.

I won’t know how something made her feel or what she really loved most.

So, will it get easier?

I don’t know.

People always joke that it’s the mums and dads that suffer most and that actually the children adore their time in nursery or school.

But the reality of that does feel a little different in the special needs scenario.

For the last 4 years she has been my entire purpose.

Almost everything I do in life centres around providing great care for her and trying to ensure the best possible outcome and quality of life for her.

When she goes for all of those hours will I still have a purpose?

The school itself doesn’t worry me.

I already love the staff, love the school, and it has more than enough facilities for her.

I know she will love hydrotherapy and rebound therapy.

Equally, I know she loves all the switch-controlled lights in the sensory room.

She even loves going to get her meds done by the school nurse because they show her a Doc McStuffins doll every time she goes in.

I have signed up to do some voluntary work where I get to help parents of newly diagnosed children.

This will be a couple of hours a week and I am hoping hard that I can make even a tiny difference to another family’s life like so many have done for us.

I have a few times felt an ache of grief in my heart as I peruse the supermarket, “back to school”, aisles at all of the things we don’t get to buy.

I half want to buy it all anyway just to say that I did, but I don’t know.

The pencil cases, the lunch boxes, the drinks bottles, the bags.

I love it all.

For us lunch boxes are fancy medicine bottle containers, pens are for parent-school journal, and any bags you buy better fit several outfit changes, nappies and all of the many other accessories a child with complex needs requires daily.

Buying shoes that fit her splints was interesting.

When I asked other parents what they bought I got a whole series of frustrated replies.

Parents that have visited just about every shoe shop in their town and tried on copious amounts of shoes only to find them not wide enough, impossible to fasten, or just too comically big.

I think that maybe things don’t get easier; they just change.

Often with that change comes a new perspective or maybe a time for sad reflection where you realise how things didn’t go as you originally expected.

I didn’t want to fill out an IEP, or an EHC, I didn’t even want to know what they were.

I wanted to remain blissfully ignorant as I walk with my child to the school gates, at a school near our house, not far away.

“Can, “random name” come for tea?” I want to hear.

“Please can I have one of those bags? ‘Random name’s’ mummy bought her one,” I expected to hear.

I wanted to get her home and ask about her day and her reply with an ignorant grunt… not through being nonverbal, but through being a typical child that is feeling tired and sassy after a long day at school.

Don’t get me wrong.

I adore absolutely everything about my little girl.

But that doesn’t mean that sometimes I wonder how things could have been.

My eyes have been opened to a whole different world of education and I am very grateful that it exists.

I know that in a few months’ time our routine will be in place and I will have a slightly better feel for what the future holds for all of us and how to continue navigating on the path we have been placed on.

In some ways things will improve from an appointment perspective – physio, speech and language, orthotics, and OT appointments will all happen in school, amongst various others.

Most pleasingly – the standing frame is going to live at school which will take away one huge battle we have each day at home!

Wishing the best of luck to all families of children starting nursery or school, or indeed just moving up a year.

First Day Jitters

How many moms out there currently have the first day of school jitters?

I know I sure do!

My first born, Oliver, starts Pre-K at the end of August and the boy has never even been in daycare.

When we first started doing therapy sessions, they would take him back without me, so they could have a one on one session without distraction.

The first days and weeks were hard.

As soon as he caught wind of what was about to happen, he would start crying for me and not want to go.

After all, I have stayed at home with him ever since he was born.

There were a couple times when I would give in and go back with him, but he would just cry for me to hold him and ultimately not get his session done. Luckily, we progressed and moved past this stage.

Now here we are, weeks away from the first day of school, and I can’t help but think of how he will react.

Will the first day be full of crying?

Will he come back excited for the next day or dread it and beg not to go back?

Time will only tell, and I know I am not the first mother or father in these shoes.

Thankfully, we fell in the hands of a school who will implement a health plan for my son.

We have nurses who are eager to learn how to cath my son, so that he is comfortable all day.

We even have cafeteria staff, taking in to account that he has certain allergy risks that need to be avoided.

They may seem small or even monumental to some, but small steps like this get us up the ladder for a successful school year.

A successful introduction in to the real world.

I even took advantage of social media, and reached out to a local mom’s group to introduce my son and encourage them to show their children and let me know if they had questions regarding his means of transportation (wheelchair) or anything else.

I wanted to open the door for communication, and break down the barrier we all may feel sometimes when we’re told, “not to stare”, or to, “mind our own business”.

I do not know when I will stop feeling so nervous about Oliver being out in public school, but I hope he can make the best of friends and memories while doing so.

We Need to Talk About the, ‘Hard Stuff’.

I once wrote about some of the hard stuff, the taboo things, the unglamorous and really challenging things about living with a child with complex needs.

I was slated online, I had blogs written about me, I lost friends and even worse I had death threats sent to me that meant I had to get the police involved. All because I dared to talk about the hard stuff.

What people don’t realise is we NEED to talk about the hard stuff.

I asked recently on a Facebook group for parents of special needs children if any of them ever felt like they had post-traumatic stress disorder or anxiety related to raising their children or if any of them had felt they needed counselling.

The answers were incredible.

So many parents of children like my son are struggling in silence.

Why are we not allowed to talk about the hard stuff?

Some reasons I have been given include:

It is disrespectful to my child to talk about anything other than how wonderful he or she is.

(Yet it’s ok to talk about real life with non disabled children in all its glory?)

It magnifies the false belief that disabled people and their families need sympathy and to be pitied.

(Sometimes our children ARE suffering so is sympathy such a bad thing?)

It makes out special needs parents are some sort of perfect species and better than anyone else.

(We are only doing what needs done – if others see that as super human, then that’s their issue, not ours.)

It perpetuates the thoughts that abuse to the disabled is OK, after all, they are such a burden.

(If ALL we spoke about was the hard stuff then maybe, but I don’t know any parent who doesn’t delight in showing the wonderful side of parenting a disabled child too. It’s about balance.)

So for all these reasons, and many more, parents of children with severe and complex needs have learn to be quiet about certain aspects of their lives and instead only share the glorious and inspirational moments of having a disabled child.

Which leaves parents feeling alone, anxious, misunderstood, desperate and vulnerable.

They live one life in public and a totally different, very challenging one, behind closed doors.

So what’s the answer? The answer is simple: we need to talk about the hard stuff too.

We need to talk about how hard it is to clean poo from a child whose body is almost the size of the parents.

We need to talk about hospital stays, the effect this has on siblings and spouses and the financial burdens of it all.

We need to talk about seizures.

We need to talk about the stress of giving medicine daily to a child who fights with everything in him not to take it.

We need to talk about lack of sleep, lack of respite, lack of services and lack of support.

We need to talk about our worries for the future with a child who will need 24/7 care.

We are not looking for sympathy and we don’t expect answers. We just need to talk about the hard stuff because otherwise it eats away at our hearts and minds and destroys us.

Please let us talk, both privately and publicly. Our lives don’t deserve to be hidden any more than our children do.


Who Is That in My Home?

Accepting you need help is never going to be easy.

You don’t want to come across like a bad parent, you are terrified of the social services and you are conscious of what others may think about you.

Well I was anyway. I saw it as a sign of weakness that I couldn’t care for my own son.

But the truth is, I could care for my son, but not care for myself at the same time.

There was no weakness, but pure exhaustion, as my mind and my body began to tell me over and over again that I could not keep going the way I was.

And there was the reality that my son was too complex for me to care for alone in the week when his Daddy was working.

For the time being anyway, whilst we waited for a more suitable home, and for Zachariah to start school.

The strains of an unadapted house were affecting my physical health.

The increase in seizures meant I could not leave Zachariah unattended, not even for a toilet run some days, (you soon learn how to hold it in).

The therapy was too much for just one carer as he has grown so much.

Things were changing, but I was not able to keep up with it.

Just putting Zachariah in his standing frame is a huge job, which leaves me feeling rather tired afterwards.

For Zachariah to continue having all his needs met, and for me to not run myself to the ground, I needed to get some help in the home.

Summer holiday were approaching, and I just knew it was the time to request PA hours.

He would be leaving nursery and would be at home with me for around 8 weeks.

So, I had the assessment done and was delighted to be awarded weekly PA hours.

It was so strange, but I knew only good could come from it. I selected 3 close people who know Zachariah really well and started in July.

It was overwhelming and extremely hard to accept that it was happening.

Having someone in my home is definitely going to take some getting used to.

Not to mention the training!

Trying the teach someone how to care for your child is harder than I thought it would be.

But I guess that’s because we don’t necessarily think about what we are doing, we just do it!

Then there’s the trust you put in others.

Every time you leave your child with a new person or at a new place, it will more than likely come with more worries and concerns.

When we first left him at nursery and at Derian House, I had similar worries, and anxieties.

As you don’t truly believe that anyone else can care for your child the way you do.

But I’ve been proven wrong a few times now, and seen the rewards of Zachariah spending time with other so it has gotten easier for sure.

And not forgetting the confidence you need to help others gain when looking after your child. I know our PAs struggle with this.

They do not have the confidence in themselves in particular areas to truly be the best carer for Zachariah.

But hopefully with mine and Tim’s help they will develop this.

Which can be a challenge where you also doubt yourself.

Even after 4 years of dealing with seizures, I still get anxieties now.

I worry about the next seizure and if he’ll need rescue meds.

So, to try get his PAs not to worry too much is quite hypocritical.

But the main thing is, the beginning of this new chapter has been a great one.

Zachariah is really enjoying his time with some of his favourite people, and I am starting to see how I can get some respite and do some work with him being looked after properly.

We just need to adjust a little, and allow the PAs to settle in nicely to our family.

I am now not ashamed to talk about it. My four-year-old son has 3 PAs and that’s OK!

Because my son also has disabilities, complex medical needs, plenty of appointments to keep us busy, daily therapy routine, feeding issues, and sensory needs.

If you are struggling, and are worried what others may think, I really hope this gives you the courage to step out and ask for help.

I have no regrets.

Much love,

Rochelle (My Daily Miracle) xx