By the time this blog goes live, all being well Jaxon would’ve had his surgery that he’s waiting for.

In May I made the difficult decision to have him placed on a waiting list to allow a surgeon to place a feeding tube directly into his tummy.

A gastrostomy.

I put it off for a while, Jaxon has been through so much in his short life that I didn’t want to put him through the discomfort that surgery brings.

I quickly realised that Jaxon wasn’t going to transition onto oral feeds any time soon, if at all, so surgery at some point is extremely inevitable.

For most children, the insertion of a G tube is a pretty straight forward, simple surgical procedure that takes about 20 minutes to perform and would normally only involve an overnight stay in hospital.

However Jaxon is more complex than a neurotypical baby which means the risks that surgery carries are a lot higher for somebody like him. He’s also very small for his age, at almost nine months old he weighs less than 6kg.

But the hope is that with surgery, he will tolerate his feeds a lot better and he will go on to pile on the pounds and thrive.

It will mean the NG tube will come out of his nose, his beautiful face will be free of tubes and tapes.

The irritation that Duoderm and Tegaderm cause him will be a thing of the past. It will mean we can leave hospital as he will no longer have to be monitored on overnight feeds.

It will mean he doesn’t have to deal with the discomfort that having a tube down his throat 24 hours a day brings.

It will also mean he will have to be put to sleep. It will mean he will have to have a hole put in his tummy.

It will mean he could end up on the high dependency unit if things go wrong due to his already very complex medical needs. It carries the risk of infection.

An infection that his body might not be strong enough to fight. The risks are small, but things are more likely to go wrong for a baby like Jaxon.

Since Jaxon was born I’ve had to make several difficult decisions.

The hardest one I ever had to make was the decision to sign a DNR when it wasn’t expected that he would survive coming off life support.

That was what we believed to be in his best interests at the time and I don’t regret it.

We decided after days and days by his bedside, with wires and tubes everywhere, if he wasn’t able to fight any longer that the kindest thing we could do was let him go peacefully and not prolong his suffering by resuscitating him again and putting the tube back down his throat.

Thankfully he had other ideas and almost nine months on he’s still here with us.

The decision to electively put Jaxon through surgery is the second hardest decision I’ve made since he was born.

The pressure to make the right decision can feel suffocating at times. If I don’t allow them to perform this surgery then he’s stuck with the discomfort that a nasogastric tube brings.

If I do allow them to go ahead with the gastrostomy then I’m possibly risking his life if things go wrong. It’s a pretty straight forward operation but Jaxon isn’t a straight forward baby.

Therefore the risks for him are a lot greater and that weighs heavy on my mind every single minute of the day.

I wish I didn’t have to make this decision. I wish I wasn’t filled with anxiety over impending surgery.

I wish my baby could eat orally. But he can’t and I don’t know if he ever will so this is in his best interests.

When the anxiety smashes into me I have to remind myself that I’m doing this because it’s what he needs and in the long run it will be better for him.

I’ve sat on my hospital bed and thought about cancelling the surgery. I’ve wondered whether Jaxon is too small to be going under the knife.

The anxiety gets the better of me and I start ruminating on all the reasons why this is a terrible decision that I’ve made.

Then in the next moment I switch, shake my head in anger at the fact I’ve even contemplated putting a stop to him having the NG tube removed and the anxiety goes the other way.

What if they need the HDU bed for an emergency? What if the surgery gets postponed for another month and we’re stuck in hospital again? What if for some reason it doesn’t go ahead?

It’s exhausting. The way my mind works at the best of times due to having a personality disorder is like mental torture, it’s a million times worse when I’m faced with stressful situations such as these.

It feels like we’re damned if we do and we’re damned if we don’t.

If Jaxon does have it done and it goes wrong then it doesn’t bear thinking about.

If he doesn’t have it done then we are stuck here in hospital whilst the world passes us by because Jaxon can’t go home whilst he’s having overnight NG feeds.

So as I go to sleep the evening before his surgery is scheduled to go ahead, I’ll stroke, kiss and touch his tiny tummy, I’ll hold him close to me and keep everything crossed that it will go as smoothly as it possibly can.

 

What has been one of the most helpful things you’ve ever been told since your child’s diagnosis?

Or what do you wish you knew then that you know now?

Or is there something you found out that really helped you at the time?

I thought I’d compile some of mine

Discounted Bills

It took me a long time to realise that not only can you apply for a council tax reduction if you have a disabled child.. you may also be eligible for extra bins for medical waste etc.

In those early days I was astounded at the amount of cardboard boxes and plastic containers we got through each week. We used to keep going to the tip which was hard with a screaming, angry child, and at the time a very small car.

Obviously these things will vary in different towns/cities/countries, bit it is always worth checking with citizens advice, or even just other parents to make sure your bills are as low as they can be.

After all, raising children like ours isn’t easy especially if you are now unable to work full time or are paying excessive childcare costs. The extra stuff you need to spend money on is surprising. Dribble bibs, tube pads, extra nappies, baby wipes long past “typical nappy age”, car parks at hospitals, and so on.

Same applies for days out… many attractions will offer a carers discount and should be able to tell you what provisions they have made for people with mobility impairments or additional needs.

There’s often a cheaper alternative

I’ve mentioned this example before – a lot of tactile spiky balls and toys to aid development can be bought in £ stores or pet shops much, MUCH cheaper.

It shocks me sometimes the extra cost they can put onto products labelled “special needs”. Same goes for equipment, have a look on social media for second hand special needs equipment.

We got a wheelchair once for £600 which would have been an unaffordable £2400 once. It’s amazing what you can get.

We also got hold of some rare toys we had been wanting for Amy for a long time by a good search on eBay.

Other Special Needs Parents

She doesn’t tolerate a sleep system and often gets tangled in her tubes which is obviously both dangerous and inconvenient in equal measure. I had looked into buying an IV pole because the pump stand we had didn’t solve the issue. SO expensive.

Then, a parent with the same issue told me to buy an “S hook” from a local hardware store. It was £1.99 and usually used for bikes and garage storage. I tell you what.. best £1.99 I ever spent!!

It is amazing what can be achieved when you put your challenges out there. There is always someone out there who has been there, done there, and got the t-shirt and it’s always worth seeking those people out because a small “hack” can transform our lives. I recently advised a friend to use an outdoor seating cushion and tie it to her child’s chair so he doesn’t hurt his knees on his tray table.

A seemingly unusual piece of advice, but a huge money and knee saver!

You don’t have to accept a doctors opinion.

I respect and admire every professional on Amy’s team, however; trained and professional as they are – sometimes parents know best.

Sometimes there’s something in your gut telling you no, that isn’t right for us. It takes a lot of courage and persistence but the best thing we ever did was seek advice elsewhere regarding Amy’s feeding issues.

It took 4 different hospital visits, several admissions and a couple of surgeries and different feeding tubes – but our girl is now digesting her food well and is gaining weight marvellously.

Never doubt yourself. I have a bit of an inferiority complex, and I also want people to work WITH us and like us, so it’s horrible sometimes having to say that you disagree, but we are our child’s leading expert and we need to be heard.

Priority Response

Make sure everyone who needs to know, knows that your child is vulnerable. I had never thought of us as included in this as Amy doesn’t have “life saving” medical intervention as such.

But she does have a nebuliser, feeding pump and suction machine, and in the event of the powercut yes, that could be bad news.

Someone told me to tell our water supplier and our energy (both gas & electric) that we have a vulnerable person in our home so that you are given priority in the event of an emergency.

Charities & Grants

I initially hated the thought of being labelled a “charity case” but the truth is, a lot of the stuff our kids need is expensive. When things are expensive you cut down on luxuries like renovations, holidays, self care treats and so on.

Life is damn expensive at the best of times but currently we are trying to fundraise for a powerpack for the wheelchair and a portable hoist.

This is after having raised money for a special needs bed. In the UK you can apply to Family fund for things like iPads, holiday vouchers, therapeutic hot tubs.

You can apply to New Life for medical equipment/sensory products. Because of these hard working charities, and kind donators, we have been enabled to go on 3 UK weekends away with wheelchair access.

We have funded an iPad which has been instrumental in keeping car journeys and days out as calm as possible. New Life helped fund a PPOD seat so that Amy can have somewhere comfortable to sit instead of being restricted in her wheelchair which is more for postural and practical purposes. Find out what is out there, there are so many charities to help you.

Charities again!

They organise special inclusive events that are accessible to people with a whole variety of different needs. It is a huge boost to your mental health to connect with other families in a similar situation and to have your normal be fully normal and accepted.

Places like this are a real lifeline especially for those who struggle to access the community through fear of judgement or feeling isolated. Where I live there is a SEND group on Facebook where you can talk to others about services in your area. It is a fantastic tool and it makes me wonder how people coped prior to the invention of the internet!

Most of these charities will have both real and online support groups so that you need never feel alone again. Can’t sleep?

One of us will be up and there for you! I love how connected special needs parents are and the community that exists. People are rooting for each other, celebrating every win, and joining in with grief when things aren’t so great.

You can give back whilst also needing help.

Once you’re in a place where you have some (if any!) time on your hands… I’ve loved nothing more than finding voluntary work.

Giving back is a great feeling. Being a carer is hard. Sometimes like me you are totally unable to work.

Committing to something can be difficult. But with the right charity or company, you can do what you can, when you can, and it can be a real boost to your self esteem knowing that you are doing something that is making a difference.

My self worth took a dip when I had to leave work… even though being a carer is actually harder work, it isn’t always perceived as such, which is very frustrating. I recently did a Birthday fundraiser for a charity close to my heart, and I honestly felt happier than I have felt in a long time knowing the difference that money can make. It also helps restore your faith in humanity that other people out there see the need and want to help others.

One thing I knew back then that I know now – is that this all does actually get easier.

Whilst in some ways it gets harder (child getting bigger and harder to carry for example), and new challenges will be thrown your way almost consistently; you become more resilient.

What might have floored you in the early days, won’t even make a dent in your armour this time. (Although some days it can only take a spilt brew to send you over the edge!!). The point is, you’ll get used to things, you’ll start to see patterns emerging, you’ll prepare and pre-empt things better, you’ll learn effectively a whole new language. You’ll acquire this skillset you didn’t even know you were training for the whole time.

You’ll pick yourself up, dust yourself off, and carry on fighting the good fight, because you know that this little person needs you. And you need them.

 Discovering Firefly

Finding Firefly early on was a game changer for us. Once Amy got to the age where she would be sitting unaided I felt a lot of grief at not being able to do simple things like put her in a swing at the park, or in a child’s seat in a shopping trolley.

We always got looks when we used it but the comments we got were so positive. People were impressed and amazed that this thing looked non medical and served a useful purpose.

It meant a lot to get a slice of normality, for my kid to be doing stuff other kids got to do.

Obviously as they get bigger that gets harder and though we still use the GoTo and Splashy regularly, I need a bit of extra assistance now. Anyone I meet who is at the start of this journey I can’t wait to tell them about these useful “hacks” to make this all more normal and enjoyable.

Look After Yourself!!

Now I feel like a bit of a hypocrite here because I am still guilty sometimes of not looking after myself properly.

I binge eat convenience food and indulge in all sorts of rubbish habits. However I have now got good at going to the GP when I need to.

It’s a very difficult thing to do because we already have so many appointments and interventions for our children that it’s very easy to put off our own needs in favour of trying to have a quiet life. But it’s so important. Not just for ourselves but for our little ones who need us to bring our A game as much as possible.

I hate the implication that self care is a little coffee with a friend now and then, or a walk in the countryside. The reality is yes, we definitely do need all of those things, BUT it doesn’t detract from the fact that sometimes you’re going to feel completely overwhelmed and you’re going to want to scream into a pillow dramatically shouting WHY MEEE.

Just because you got your nails done, or you read a book a week for 3 months doesn’t mean you should feel amazing. I think an important way to look after yourself is to be forgiving to yourself and allow yourself to feel whatever emotions you feel.

You can’t be mindful all of the time. You can’t meditate every day. Sometimes self care is actually just doing whatever it is you need to do to get through the day and get to sleep at night. I think too much emphasis is placed on depression and how you can “fix” it with these simple acts.

I think our lives are too complex for that and whilst we do live in the moment as much as we can, worry, and stressful events are also inevitable and we need to be realistic and not expect too much of ourselves.

I probably could go on and on. There is a lot I wish I had known in the early days.

I wish I had worked harder to get to the GP to look after my own health needs. I wish I had realised that needing respite doesn’t mean I’m a bad parent.

I wish I hadn’t isolated myself so much at the start because I was drained and fed up. I don’t spend my days regretting things because we go through life surviving the best way we can, but I do sometimes reflect on those days and think how much easier they could have been if I had known certain things.

I almost wish I’d been assigned a mentor to help me through those days, someone who has been there already and can relate to my situation. For so long I felt like we were the only people in the world going through what we did, but we weren’t at all.

She stands at one foot nothing. Her hair high up on her head, well, I say hair but it’s more like wisps of wild light strands tamed by a tiny hair band that her mother has colour coordinated with her outfit.

It’s heart warming watching how she interacts with her eldest cousin, Ethan.

I have lost count of the amount of children who have been so frightened by Ethans screeches and laughter that they’ve ran off into their mothers open arms.

I know children find Ethan hard to understand and I know he can be loud which can make a little one jump and a parent glance over at us.

I often smile at the parent and help Ethan wave at them, sometimes a parent takes their child over to meet the loud boy but most times they pretend they don’t see us and hush their children away.

I can tell you that, that hurts and only teaches your children that different equals scary.

She is used to her cousin. She is at the age where she watches us all and sees how her aunts, uncles, grandparents and her parents interact with Ethan. She copies the behaviour she sees, like all toddlers, she is always learning.

Her mammy, my sister, brings her to see her three cousins as often as she can. She is the bossiest little person I have ever met.

She demands my youngest son plays with her, but with him being 5, he has little interest in her. She moves on to my middle guy who absolutely adores her.

She can get him to play anything with her for as long as she allows him to.

She is a strong willed little lady who knows her own mind, yet she is so gentle and affectionate.

She toddles into see Ethan. “Hello Ethan, awww hello” Ethan can hear her but cannot see her as her head doesn’t pass the top of his table. He laughs as all he can see is her wisps of hair floating along his table top.

“Ethan laughing” she points and laughs while climbing the chair beside Ethans.

Her mammy always brings treats for the boys, she reaches for Ethans snack which is normally the melt in your mouth ‘Skips’ and places a few on Ethans desk just as her mammy has done each time she visits.

She gently climbs onto his table and takes a ‘Skip’ in her hand, Ethan watches her and laughs when she tells him, “Let me do it, open mouth Ethie, good boy” Ethan opens his mouth as she places half a ‘Skip’ on his tongue, she then reaches for Ethans drink.

She is a pro. Her mammy hands her the drink and guides her little hand as she checks to see that the skip has left Ethans mouth. “Small dink”she offers the straw to Ethan.

He drinks from it. “Aww good boy Ethie” she repeats what she knows we say.

She leans in for a kiss and laughs when Ethan licks her as he gets confused when she tries to kiss him. “Silly billy Ethie” she claps as we all tell her she’s such a good girl.

She gets down and toddles off towards our dog Lola who hopes she has something nice that she’s likely to drop any second now. “No Lola, all mine” she tells Lola as she walks passed her.

It is an amazing thing to witness the kindness, the indifference, the affection and love my little niece shows when spending time with Ethan.

It also drills home to me the fact that children watch the adults around them and really learn from them and their interactions with others.

So, when your child is frightened of children and adults like Ethan and you comfort them and remove them, what is it you are teaching your child? Think about it. Please think about it.

Comforting them is understandable, removing them is a little harder for me personally to understand.

You’ve a chance once your child is calmer, to explain how we are all different and how some of us screech when excited or whatever the case may be.

It would be nice and a bit braver on your behalf, to bring your child over to meet the person they were frightened of, simply to show them that they are human too and just a little different.

Parents like me, should never hush you away for trying to make human connections.

We do understand that a child who has no experience with people who are different from them might stare, it is the parents reaction we watch for, not the child‘s.

We all should embrace differences and let little children know that fear of the unknown is understandable but by just spending a few minutes talking with Ethan and those who appear so different from them, can indeed make us all realise how alike we truly are.

We took Isla to an Educational Psychologist to try and get a better picture of where she is at.

She has made so much progress in recent times. In particular her verbal language and comprehension have improved but I suspected large gaps remain.

I hoped to get some ideas on how to tackle her areas of learning weakness and to create a workable plan for her last 2.5 years at primary before starting college.

The assessment consisted of two appointments of two hours duration. On the first appointment Isla’s cognitive level would be tested. The second would focus on her academic level and capability based on the results of the first test.

On our first visit, Isla was a little apprehensive going in but once there was happy to play with the toys while I chatted to the psychologist about her history and what I wanted from the assessment.

Then it was Isla’s turn to get some testing done or do some “jobs” as the psychologist liked to call them.

For the next two hours she did many activities such as pattern recognition, verbal comprehension and pairing, working memory activities and some number work.

I decided to sit in during the testing and thought she had done pretty well. I was proud of the explanations she had given to some of the verbal questions and her focus.

She even knew the answers to some of the harder questions. Our Paediatrician had warned me that these types of tests may result in an Intellectual Disability diagnosis.

But while I sat there I thought to myself that she obviously didn’t know Isla very well at all.

I was actually wondering how I could justify the ORS funding* we had been given when her results came out better than expected!

However I was suddenly brought down to earth with a large thump! Isla was sent out to play and we went through the results.

The verbal section that I witnessed did come out average for her age but everything else fell well below.

This resulted in her falling into a low intellectual disability category. It was explained that her verbal ability can lead others to believe that she is functioning higher than she actually is.

This was the first hard truth of what was to come.

So what is low intellectual disability (ID)?
The diagnosis of ID is based on measuring a child’s learning and problem solving skills known as IQ (Intelligence Quotient) and also their adaptive behaviour. What they can do in comparison with children the same age, for example everyday social skills, routines and hygiene.

For Isla her IQ was slightly lower than 70. Her age functioning was 6.5-7 years and I was told that it most likely will cap here or near here.

This puts her in the bottom 2% of the population. This is consistent with her receiving ORS Funding, no more feeling guilty that she doesn’t qualify – there’s one silver lining!

Although Isla has good verbal skills, she cannot think laterally which is quite common in those with autism. We then talked about what this means for Isla’s future.

She will never get normal employment unless with a mentor who can give her a task and supervise her.

She is unlikely to live fully independently when she is older. Her idea of socialising is not like the way we like to socialise.

Hers is very tasked based. We should not worry about the academics but concentrate on skills that will help her be independent in the future.

She will never get close to NCEA and will always operate at a pre curriculum or primary school level.

There was nothing said that I didn’t know deep down but to be told it so directly hit me harder than I thought it would.

The last snippet of hope that she would suddenly catch up was pretty much quashed in that room. I was a little numb driving home. I couldn’t speak.

I felt this huge, overwhelming sadness for Isla and this huge sense of responsibility.

This is the chronic sorrow I have talked about before in my blogs. Something that a special needs parent deals with occasionally when hit with the reality of their situation.

That punch in the gut that hits you when you let your guard down.

However once I had time to process and work through those feelings you realise nothing has changed. Isla is still Isla.

In some ways it takes the pressure off me to keep looking for ways to get her to progress and wondering if we’re doing enough.

We are much better to teach her the value of money, how to prepare food and cook than worry about basic maths facts and spelling.

It will help her a lot more for us to work on her social skills so she communicate effectively with others rather than trying to get her to write stories.

We just need to concentrate on her having a happy life doing things to the best of her capabilities than to stress her to do things she actually isn’t capable of.

She is totally in the right environment at school. Being in a satellite class is perfect as anything else would be way too stressful and counterproductive for any learning. Her brain has to work so much harder with everything she does.

Even a visit to a stimulating environment can exhaust her (which it quite often does).

We had the second appointment yesterday and I took along my husband so he could hear the  explanation by a professional first hand rather than my relayed attempt.

We didn’t sit in for her testing this time but went and had a coffee and came back for the overview again.

This time I was more prepared and wasn’t so much of a shock when Isla was showing well below in most areas. Although she is in Year 6 she is more consistent with Year 2.

Do I regret going through this process? No. Although it has been a huge reality check and hard to take in, it was almost refreshing someone giving it to me straight.

We now have a baseline of where Isla is at so can focus on the things that matter.

*The Ongoing Resourcing Scheme (ORS) provides support for students with the highest level of need for special education in New Zealand.

It’s assumed when you have a baby that they will instinctively know how to, and want, to eat. It’s a primitive desire and need in order to stay alive yet it doesn’t always come easily or naturally to everyone.

Many babies struggle with breast feeding and many mums feel guilty when they struggle too.

From day one feeding our children goes much deeper emotionally than many realise.

Being able to feed your child and nourish them is much more than just basically meeting their needs and more about being able to provide, feeling adequate and protecting them.

Consequently not being able to feed them evokes feelings of inadequacy, frustration and failure.

Unfortunately feeding is not a one off event so the cycle of frustration and stress can be repeated so often if a child isn’t eating that it can impact so much on a parent to child relationship.

I know exactly how hard it is to struggle to feed your child.

Initially my daughter fed well. She was born small (the second of twins) but had a strong latch and sucked well.

However despite how well she appeared to feed and how much breast milk I produced she still failed to grow as expected. I didn’t know then, but that was the start of a very difficult and long struggle with feeding for us both.

Weaning was so stressful. She would spit, pull away, choke, vomit and refuse everything and mealtimes left us both in tears before she was even a year old.

She had no allergies of any significance but she just didn’t like solids and still wasn’t growing much on breast milk.

Doctors suggested formula and this caused even greater stress as colic and hours of screaming left us both exhausted every day.

Progress was so slow and difficult meanwhile her twin brother was eating a large variety of foods with ease and growing at a quicker and healthier rate.

Struggling to feed my daughter made me feel such a failure.

She was catching every virus and infection going which only made feeding her even harder and we ended up in a vicious circle of feeding struggles, weight loss, illness and back to feeding struggles.

It was never ending.

Fast forward ten years and my daughter is still very small and underweight.

Her skin is pale, she lacks energy and she now has a variety of diagnoses including autism, anxiety and AFRID (avoidance and restrictive food intake disorder). She has less than ten foods she will eat and she only drinks one brand of orange squash and a small amount of milk.

The struggle to feed her didn’t go away; it just changed as she got older.

School is a huge challenge. There is not one thing on the lunch menu she will even look at. Packed lunches go untouched and snacks get binned.

She doesn’t even like fast food like french fries or pizza.

One of the hardest things of all is when she does have a food she will eat I live in fear that one day the manufacturers may stop making it or even just change the packaging.

It has happened before and it’s terrifying. A few years ago when the makers of the only juice she will drink changed it to a ‘new and improved’ version she went days without drinking and I drove miles to find some older bottles.

It broke my heart. I have cried on the phone to companies, begged them via social media and put appeals out in my town to help me at times because I get that desperate.

As a society we can be so judgmental to anyone who struggles to feed their child.

I have had my child called fussy, demanding and spoiled. I have been called weak, spineless, a terrible mum and a lot of swear words I can’t repeat all because I have admitted my struggles to feed my child.

It’s assumed my daughter is just a fussy eater because people can’t grasp the severity of eating issues that autism and other conditions can bring.

Struggling to feed your child is so demoralising and exhausting.

There is no help out there really and as a parent you feel so isolated and alone, terrified to tell anyone what mealtimes are like.

My daughter needs help but we are struggling to find it.

Parents are left to struggle on alone then criticised when their child loses weight again.

This week I have cried as yet another company has withdrawn permanently one of the few remaining foods my daughter eats.

Ten years of struggling to feed my child has taken its toll.

Once again I feel a total failure because I struggle to feed my own child.

Sunny days at the park and on the beach…Community summertime festivals…Vibrant displays of fireworks…They’re all facets of the summer season that families typically enjoy.

Once school is out, outdoor activities and crowded places beckon us to come and join in the festivities.

With a life that’s anything but typical, and living in somewhat of a bubble, these are all ventures that my family tends to avoid.

When the school year draws to a close, my son is thrilled that his online homeschool courses are done until August. Sleeping in and having more time for music and other creative outlets makes for a happy teenager.

Being on the Autism Spectrum, noisy, busy places and blazing heat don’t meet his standards of fun.

For my eight- year-old daughter with multiple disabilities, an inability to regulate her body temperature in extreme climates limits our time spent outside.

Overheating is a sure-fire seizure trigger, and we prefer to remain overly cautious.

Sure, we could go to the park, or even the pool. With the South Carolina sun beating down, we’d need to get there super early to find a shady spot to fend off the draining humidity.

And the crowd. With holiday bedtimes falling a little later, and the staggering time it takes to get us ready, packed and out the door, no one is leaving our house early enough to accomplish that feat.

We attempted a beach trip last summer.

Unfortunately, my daughter is highly accustomed to her SleepSafe bed, and will not sleep a wink in any other location.

Nowhere. Not even in the car. Her complete lack of sleep led to my husband and I being awake all night with her.

Being that my son loves the water and long car trips listening to music, we are reluctantly planning another beach trip this summer.

Fearing that her interrupted rest (another seizure trigger) would lead to serious issues if we stayed, we returned home after one night. Once back in our bubble, slumber was restored and we were all peacefully back in our comfort zone.

We are apprehensive and worried, but we will once again place one foot outside of our bubble. We ALL deserve a family vacation.

He and his sister deserve the opportunity to be kids and to experience the sand and crashing waves at their feet.

We won’t simply jump in our car and go…meticulous planning and organizing will come first. We’ll tirelessly research wheelchair accessible locations. We’ll search for music shops and fun, indoor activities we can do together.

We’ll carry along a multitude of necessary essentials for our trip. Our cargo will include: an abundance of medications, a pop-up bed/tent to mimic the safety bed, favorite toys and an oxygen tank.

We’ll have a pulse oximeter, headphones, a NutriBullet, diapers and more in tow. The fundamental pieces of our bubble will travel with us.

Summer is a time of year that our family still revels in, despite the different lifestyle that we live.

Mornings at home are filled with cuddles on the sofa with my daughter…Afternoons are spent playing in her ball pit in our blissfully air-conditioned living room.

Evenings become “movie nights” with my son, brimming with documentary films and baked sugar cookies.

Our routine is a bit more relaxed during this time of year; we enjoy life at a slower pace for a while.

Most importantly, I cherish the respite from all the school germs while we’re on break.

Families that have children with special needs find ways to make it work; we’re creative and resourceful.

Ours may not be a conventional summer break, and that’s okay. At the end of the day, the only thing that matters is that we’re all together.

Precious memories can still be made within our bubble.

We are now 9 years into our special needs journey. The roller-coaster that never stops. One you want to ride and sometimes it’s great but most of the time you’re so scared but you just got to ride it out.

I have experienced an awful lot of highs and lows and have learnt lots along the way. I thought I would share some of the things I’ve learnt along the way with you.

Please share with me any other ones you have!

Ignorant people

There will be some people that no matter how much you try to get them to understand your situation, they never will. You will adopt a smile and grit your teeth approach for most of the time and the other small bit of the time you will become an angry bear looking for its next feed!

Car sticker

A sticker on the back of your car saying leave 5m for wheelchair access will become invisible and will make no difference! Also those using a disabled bay without a badge will become part of your daily battle too.

Friendships

Although you will loose a lot of your friends, you will actually make a whole new group of incredible friends. Most of whom you won’t actually ever meet you will just talk to them every day on social media.

There really is no support like that of an SEN parent.

Preparation

Being prepared is key. Always be ready for every eventuality. Having emergency bags packed all the time and cupboards stocked and a big diary ready for all the appointments are a must.

Sleep

Sleep becomes a thing of the past. There’s being a parent tired, then there’s being an SEN parent tired. Believe me they are totally different.

You will pull many an all nighter unfortunately without the blaring music, neon lights and alcohol.

You will be mentally physically and emotionally drained constantly.

Cheerleading and boxing

Two sports that don’t go hand in hand normally but in the SEN world do! Boxing gloves and pom poms should be handed out at time of diagnosis!

You will become your child’s biggest cheerleader. We all want our child to do well but you will constantly be cheering them through lifes battles and fighting your way through all the tough times and battles with every single health service to get what is right for your child.

Patience

Patience really is a virtue. You will practice the art of deep breathing multiple times of day. In the same breath you will also be muttering words the English language should not hear!

Times will be trying especially on no sleep but you can do this!

Compassion

You will become the most compassionate, passionate and understanding person. Judging gets noone anywhere. Showing those who are going through troubles that everything will be OK becomes the normality.

Tears

You will cry ALOT!! Happy tears, sad tears and tears you’ve no idea why! I’ve cried into my cereal before and I’ve no idea why! You will cry not only for yourself, but your child and also everyone else  going through the same things.

Medical jargon

You will become an expert in medical jargon and will understand what they are talking about on Ambulance, 24hrs in a&e and Holby city. Medicals words like SATS, tachiacardic, IV, stable, fluctuating, stoma etc become your everyday language.

Doctor

Youre basically a Dr without the degree. Come to think of it you’re also a physiotherapist, occupational therapist, surgeon, manual handling expert, sleep expert, PA…. The list goes on!

Parents know best

You know best about your child. Whether that’s what they need, what they are trying to tell you or what treatment they need. You won’t be listened to a lot of time but intuition is great thing.

Never ignore what you think is happening. You will never be wrong.

DLA forms

These should be handed out with a stiff drink and a bowl of snacks. You will cry and walk away from those forms more than anything you ever do.

Hours of writing about exactly what you’re child can’t do and all the bad days is ultra depressing. My one tip would be to photo copy the forms so you can transfer it over onto the next renewal forms.

Bedtime reading

You will no longer read a mushy love story or an exciting thriller book, these will be swapped for medical journals or online documents. Reading countless articles about how different therapies can help your child will become you’re everyday reading.

Pricing

Be prepared to have no money…. Ever! Everything costs triple the price when special needs is put in front of it. Therapies, equipment and toys will be so expensive toy will have to sell your soul to fund them.

Celebration

You will celebrate every single milestone as if you’ve just won the lottery or world Cup – because let’s face it, you have!

From putting their finger up their nose or pulling your hair, to throwing the spoon or smiling through physio. Everything will be celebrated because you know how much strength went into doing it.

Pharmacy

The local pharmacist doesn’t need to ask your name when you walk in to collect your child’s medicines. They will automatically collect the prescription for you as you’re in there every week.

They will also recognise your voice on the telephone!

Rants

You will have daily rants about everything. They will become the norm. From rants about sleep to rants about why your child isn’t aloud a hood on their specialised wheelchair. You name it you will be able to rant about anything.

Man you will need this to survive!

Food

You will find yourself stockpiling on food your child eats. It doesn’t matter if they eat nothing else at least they will be eating something.

Best job in the world

It may be the hardest and toughest job you will ever do, but it is also the most rewarding job you will ever do. Let me tell you that you will always pull through whatever this journey throws at you.

You are strong and amazing and never forget that. You are not alone on this journey no matter how lonely the days feel.

She has a beautiful mind. Like a treasure chest waiting to burst open and reveal its magic.

Except we haven’t got a key to the chest yet. We aren’t sure a key exists, so we are working on making our own special, personalised key in order to reveal all of the wonder

Until we’ve worked that out though, I know that those closest to her understand. Each movement, sound, eye point, ALL communication. Amazing communication. Never take any of it for granted. A laugh or a smile is worth a thousand “I love you mummys”, a tap for “more” is worth 800 telling me about her days.

You see, my daughter is non verbal. And sometimes, I hate to admit; that’s not okay. Sometimes it isn’t anyway. Not to contradict the title… because it is okay… just sometimes, on rare occasions, it isn’t.

Allow me to elaborate. You know when you plod on everyday accepting everything and dealing with what CAN be done as opposed to grieving what can’t be? Well yes, sometimes I have an emotional wobble and suddenly all of it is not okay.

I think as she gets older it’s become more about adjusting our expectations and creating manageable goals.

At the start I had so many people tell me “she WILL do this, you just have to have hope”. It actually puts a lot of pressure on both the child and the parent.

It also implies that if she doesn’t ever do that thing.. that she has somehow failed or not tried hard enough.

That’s never the case. Ever.

I looked to other parents with older children for support, and did the unavoidable comparing and thinking “hey that might be us one day”.

Time has passed and I can see now that no, that isn’t us. “My son didn’t say a word until he was 3 then one day he just said “Hi mummy”. I waited secretly and patiently for months thinking maybe that would happen to us.

That one day, as if by magic, all muscular issues would vanish and she would say some words I had longed to hear.

I dream constantly that she speaks. I dream that she can eat too. Then I wake up half excited half confused to the eventual realisation that it wasn’t real.

It doesn’t matter. Most of the time it’s okay.

What caused my most recent wobble was being told that Amy wasn’t (yet?) a suitable candidate for eye gaze.

Of all the diagnoses and information I have had to digest over the years, this one was probably one of the most devastating. I had accepted already that verbal speech is likely not going to happen.

So I shifted my hopes on to eye gaze systems.

I’ve seen so many people utilise this amazing technology to communicate their needs, opinions and so on. It’s fantastic and it makes me so happy that it exists.

Anyone who meets Amy can see clearly that she is very alert, very social, very nosey, and has A LOT to say. Whilst visually impaired, she does have good vision. So naturally I had high hopes.

What I hadn’t really thought about was positioning. Amy finds it very hard to keep still and keep her head up. Head control is a big issue for her and she doesn’t like to be restrained.

During the eye gaze sessions she has successfully shown cause and effect skills. (example, looking at the stereo: it plays music. Look away: it stops)

Long story short, due to her vision and postural/movement issues, it isn’t appropriate, for the time being at least.

My hopes of being able to ask questions and get proper responses felt dashed. I could feel my optimism diminishing and a wave of grieve cast over me like dark storm clouds.

Instead we are continuing work with PODD symbols. It’s like an entirely different language. Already when I discuss Amy related things, so much of what we talk about sounds like a different language. The medical terminology, the equipment we use, everything.

We briefly visited PODD before with limited success.

Our main issue is that myself and Phil (daddy) understand Amy very well most of the time. We anticipate her needs very easily.

Certain sounds she makes, or things she looks at makes it easy for us to decipher what she might want. If she is upset we do the usual thing people would do with a baby, we change the nappy, we give paracetamol in case of teething, we wind her and so on.

So by process of elimination, and knowing our child incredibly well… we are now having to show her these symbols and try to get her to understand them.

I went through the sample booklet and actually cried. Until you have to explain these symbols to her, you realise that actually communication is a very difficult thing to teach.

So many things I take for granted. Does she understand now and next? Does she understand what a day of the week is? Does she understand that each column has different options and that she needs to pick  the column that has the symbol she wants?

All of this combined with the fact she is struggling with seizures, has difficulty paying attention sometimes, finds it hard to stay still enough to focus, and we aren’t sure entirely how her cognition is.

Because it is so hard it is hard to bring yourself to do the work… but unless you do the work consistently… you don’t stand a chance! It’s a vicious circle, a catch 22, an option I so desperately want to work whilst simultaneously don’t know if it ever will.

Communication is my biggest wish for Amy.

I love how she waves to people when we are out and about. I love how she is getting really good at high fives (but will only give you them if you really deserve them and she’s in the right mood!).

I love how her face lights up if you say “Amy, shall we go and see grandma today?” or “Amy.. daddy’s home”, or “Amy, would you like to watch some videos?”.

She understands. Definitely. If I mention a favourite toy you will see her look for it. But what we need is a nod, or a shaking of the head. She needs to be able to make herself universally understood.

Mummy and daddy can’t always be there, much as they’d love to be.

The other thing that pains me is that she can’t ask questions. Everything that happens to her is a result of me bringing things to her, or taking things to her.

Children are naturally curious, it’s one of their most endearing qualities. Amy is curious… she’s always got her eyes on everything.

Seeking every opportunity for fun and exploration. But I wish she could say “mummy, can we go to the park today?” or even better, I wish she could tell me if her seizures are causing a headache, or if she has an itch on her back she can’t scratch.

She must get fed up of me sometimes. “Amy do you want me to take your splints off? Are your feet hot? Do you want to lie on your mats for a bit?”, sometimes I bet she just yearns for that independence and time to do things by herself with just herself without me constantly in her face.

I can fully understand why she sometimes lashes out and gets frustrated. I feel her frustration too. Then I feel guilty for also being frustrated.

I see a lot of people say that they are their child’s voice for them. I don’t feel that way. I am there to advocate for her yes.

But I am pretty certain that she has an entire mind of her own that the best parent in the world could never fully interpret without spoken word.

I don’t speak for my child. I do what I have to do to ensure the best care and quality of life for her.

She has her own voice, and we are fine tuning things and working with her everyday to make sure her voice is heard.

My child is non verbal, and that’s okay…. the majority of the time.

My child can communicate, you just need to learn how to listen in the way that she needs you to.

My child is not going to change, but the world can. If someone isn’t using words to talk to you… find other ways to listen. You might be surprised at what you can learn about the world, that person, and even yourself.

I’m not known for my patience. If something isn’t working, I want an instant fix.

We’ve been told already so many times “wait and see”. I don’t want to waste what little time we have, but at the same time we need to try these things.

I’d be interested to hear the communication journeys of other families on here.

What challenges you faced and how you overcame them.