Don’t Forget…

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This week I have been reminded of the complicated life we lead. It’s the time of the quarter when it’s review appointments for Thomas.

  1. Community Health Team
  2. Hearing Assessment
  3. Epilepsy Review
  4. Hip X-Ray

And to be honest I’m sure I’ve forgotten one! I look at the wall planner and just wonder how much NHS money it costs for each of those appointments. I was looking this morning at the average cost to care for a person with moderate cerebral palsy and it was roughly £750,000 over their lifetime and that’s not including the extra cost of shoes (he wears them out quickly) and non essentials.

It’s just something that we get on with, we are told to be somewhere so we make sure that we attend and doctors and consultants tick him off for another 3-6 months.

Thomas rarely enjoys his time being discussed and assessed and I’m not sure he ever will but it will just become part of his life.

I’m not exactly sure, why I thought this would make a great post today. I found a reminder for his X-ray this morning and it kind of made me realise that he has to leave school early. I do praise some of them though who understand he has school and try to book appointments that are either before 11am or after 2pm. I’m just glad I’m currently not a full time working parent or it would be quite hard to be leaving early or going in late.

So today we’ve established that Thomas gets his money’s worth from the NHS. I can’t imagine what it would cost us if it was insurance!

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The Joys of the Eternal Terrible Twos!

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I was looking for some inspiration this morning, kids back at school, christmas decorations neatly packed away for another 11 months and life returning to normality (whatever normality actually is) and I guess it got me thinking about patience.

Special needs children need patience like you wouldn’t believe. Tonight for example, Thomas decided that he wanted to play with the vacuum cleaner rather than go to bed. Meltdown began and is probably still in progress. He threw his body to the floor about five times and screamed, kicked out, it was the full works. We know he’s tired, its the second day of school after the holidays and he’s going to be tired but he doesn’t think that.

When our daughter was his age and she had a pre-bedtime meltdown, it was easy to just tell her off, calm her down and put her to bed. Thomas however doesn’t understand the difference between what he’s doing is wrong or right. He’s just acting in a way he knows gets the biggest impact.

It’s hard sometimes remaining calm when this little person in front of you is kicking, screaming and doing everything in his power to keep you from doing your job. But we do it and we will keep doing it until he grows out of it. The joys of the eternal terrible twos!

 

New year, new diary

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My first blog of the year is about planning the next three months. I say three months because those of you with special needs children, understand that all the planning in the world can go horribly wrong!

Two years ago, we embarked on our first trip abroad as a family. It was only Disneyland Paris, a quick hop on the train, it shouldn’t have been complicated! But believe me!

  1. I had to travel to London to sort the passports out as the lady in the post office declined my check and send as she told me that Thomas’ photo wouldn’t meet requirements! I’d already spoken to the passport office who suggested I used a recent school photo graph for his passport and as he was under five it would be acceptable. However I was far to stressed at this point so I arranged to do it all in person!
  2. Thomas decided that to add a bit of excitement to our trip that he would have a 45 minute seizure, involving a hospital trip via ambulance and me spending the night watching his every move.
  3. At last we were away and thinking ahead, I’d called both the train companies (1 change) so they were aware we may need help. Eurostar were amazing, we found our seats with ease and didn’t really need assistance. The Lille connection however was awful. I approached the guard and attempted to explain that my son was disabled and instead of blowing the whistle every two seconds could be attempt to help us locate our carriage! He told me to board the train! We managed to find our seats but the travel home was awful! We ended up jumping on to a carriage which was one up from ours and having no where to store our luggage this lovely lady helped us sit down. We then had to change carriages when the train stopped at the airport! I will never do it again!

Alas, we have not been aboard since and dare not venture on an aeroplane until Thomas is older and may understand that he has to sit still for three hours.

So today we booked our family holiday to Cornwall. Even that has to be planned as we have to stop half way and it got me thinking, we plan a lot around Thomas. It’s just the way our lives work. If we think he can’t cope then I’ll either go with our daughter or we just avoid it all together.

That brings a certain about of strain to any relationship. We have an older daughter, Alana. She is nine and I’ve never really thought about it much until I started planning this blog but when she was two and a half we tried to explain that in mummy’s tummy was this amazing little friend, she was going to be a big sister! She didn’t really understand, just after her third birthday Thomas was born and she was suddenly given a new big girls bed and this tiny little person as a brother and she didn’t really cope well. Obviously I spent weeks away at a hospital and hardly saw her and then we came home with this four week old little bundle who’d done nothing but turn her life upside down!

Being three she adapted well, she went to a good nursery before attending private school for her infant years (another story) and she grew up with Thomas just being that little brother that will never quite meet her expectations. Often she asks ‘will he ever be normal?’ It’s hard to begin to explain that while we love them both so much, unfortunately Thomas just needs us that little bit more. She has this amazing life with ballet lessons, flute lessons, swimming lessons but I guess it doesn’t make up for the fact that her brother hits her, pulls her hair, her friends ask what’s wrong with him, she can’t play with him like her cousins. I look at her sometimes and I think that’s what bothers me more! I grew up with my little brother, we are two and a half years apart and for the most part he drove me crazy but he was there by my side. I had this wendy house when I was kid and he’d sneak in there and fall asleep and my mum would always find him lying with his duvet and his blanket! We’d argue, believe me we argued and sometimes I’d give anything to hear Alana and Thomas argue about a toy or something.

I want to help her understand that Thomas is what he is and earlier when I was watching him playing boats in the bath, for that 15 minutes, he looked like any normal 6 year old, splashing and enjoying bath time and I couldn’t help but get my camera out and snap a few pictures, just for my memory I guess.

We are this amazing family that have gone through so much and I’ve come out of 2016 finding it extremely tough and emotionally draining. But I’m moving forward with setting goals a family. I’ve never really considered that before. School set targets and we assist with them but family targets I’ve never really thought about.

Alana

  1. Learn all her times tables off by heart
  2. Read for at least 10 minutes per day and not just school books
  3. Practice writing by keeping a diary

Thomas

  1. Learn to fall asleep on his own
  2. Drink from an open cup
  3. Try and feed himself with a fork – perhaps with assistance

My Goals

  1. Lose 2 stone
  2. Start and maintain a bullet journal
  3. Graduate from university (Finally)

The other half

  1. Communicate with at least five businesses a month
  2. Plan his social media for the next three months
  3. Have one order a month

Any of you got any short term goals for this year? Are you a planner like me?

 

Merry Christmas…

As we approach the Christmas holidays. I am thankful for a lot of things. 

Being surrounded by family and friends and having a wonderful little girl and gorgeous little boy make it so worth while! 

I never for a second take them for granted. 

As it’s the festive season I maybe on the down low for a couple of days! But I’m sure once Thomas has ripped up all the wrapping paper, thrown the toy across the room and is playing happily with the box, I’ll be back! 

Wishing you all a Merry Christmas!

What a great start to the day – Seizures

Six years ago I pretty much knew nothing about Epilepsy. The only things I really knew I’d learnt from watching either ER or Casualty!

I assumed that all seizures were the Grand Mal AKA tonic clonic variety and the person would fall to the floor and convulse until medicine was administered. That was as far as my education went. I could tell you about sex education, including the ever important getting a condom over a banana (Those, were the days).

I can only assume it’s because unless you deal with epilepsy, you don’t really DEAL with epilepsy. I have friends who at some point in their lives have had epilepsy, it is now either being controlled by medication or they’ve been lucky enough to grow out of it!

This morning we were woken at 5.50am to Thomas smacking his hand against my back, telling us he was having a seizure. We have come to the conclusion that he feels pins and needles in his hands, it’s his early warning sign. But the poor little guy looks terrified as he scrambles around the bed trying to understand what he’s woken up to! Unfortunately it was three times this morning!

The first time I had to deal with epilepsy was when Thomas was just over 18 months old. It was 3am, I’d come in from working an event and he wouldn’t settle. For a couple of hours, he just seemed distressed, my instinct was telling me that something was going on so I placed him in our bed and he settled. I woke about an hour later to what appeared to be Thomas choking. I sat him up, his lips were blue and he showed all the signs of choking. I rubbed his back gently as he appeared to be sleeping and within a minute he had coughed. This happened another two times that night.

Fast forward to 18 months and he is checked into hospital with a cluster of seizures, which were appearing every 15 minutes. He looked like he was choking! It became very obvious that the night choking was more likely to be seizures (how bad did we feel!?). It was the first time I had ever called an ambulance for my son and it wouldn’t be the last!

But three years on and it’s like part of our lives. Two lots of medicine twice a day, emergency medicine on standby if he has a full seizure (that has been known to happen) and a specialist who sees Thomas every three months!

We don’t know what triggers them, when they are coming and how they will be but we cope with them (well I do, can’t say the same for my husband).

One thing that I’ve learnt is no two seizures are the same! Thomas has had pretty much most seizures from absent to full to partial and not one of them have been the same.

He’s on medication and for the most part it helps, a few sneak through on occasions.

As some people know, it’s not a nice experience watching your child or partner or anyone convulse in front of you, whether it be for 30 seconds or 30 minutes! I don’t think it’s anything you can get used to, but you learn to deal with the situation.It most certainly isn’t funny or entertaining. I’ve heard stories of people taking pictures while they watch someone convulsing, just because they wet themselves or they looked like they were on something (Oh the joys of social media). I struggle to record Thomas’ seizures for medical reasons!

I go through the checklist in my head.

  1. Is he safe?
  2. How’s his breathing?
  3. Is there anything in his mouth?
  4. Is he conscious?
  5. All while timing…
  6. Is the emergency medicine on standby?

The relief when he coughs! He will usually sleep and we then begin the process of wondering whether it will be followed by another one or two as they do like to come in threes!

Today was just one of those days! Saying that, we are a far cry from how it was three years ago when every Sunday we would be expecting one. They are part of our lives, just like they are part of millions of others.

 

The Christmas Walk

isA simple family event, somehow always becomes chaos! Our annual visit to the local garden centre and their Christmas Walk is something that really makes it feel like Christmas and usually Thomas loves it, however this year he became impatient and we had to rush back to the car before really enjoying the delights of everything going on.

I’m sure like many parents, we do debate whether our children can cope with certain situations. Thomas isn’t autistic but having the learning difficulties means that as he has similar traits when it comes to his anxiety.

We therefore try to keep certain things to a minimum. For example his school every term hold some fundraising event or another and we’ve always shied away from them but after speaking to one of the parents we decided to take him to the summer fun day, it was pretty simple with the only thing Thomas was interested in was the bouncy castle. However, they turned the castle off and Thomas lost the plot so we made a swift exit!

We attempted the Christmas Fete and hats off to the PTA, it was very good. He wasn’t interested in father Christmas, or much else a part from the bouncy castle, which yet again was turned off for the raffle. We made a swift exit and headed home.

He just doesn’t understand when the world isn’t as he sees it! Why does the castle have to come down? Why can’t he run around? Why does he have to sit still?

We are ever hopeful that eventually he will begin to understand that the world doesn’t in fact revolve around him but until we get to that point, I’m guessing we will be leaving swiftly once the bouncy castle is deflated!

Meet the parents…

coffee_morningI’ve been thinking today! I’ve been finding myself reading others blogs and its my attempt to feel better about myself.

It’s hard enough to make friendships but it’s harder when your child is disabled and you struggle to attend normal social gatherings for more than 15 minutes!

Thomas has been at school for over a year now and his school didn’t really go in for the ‘meet the parents’ meetings that my daughters school did. You know the type. You take your child in for an hour or two and are expected to mingle with the mums across the school drinking coffee. This happens a couple of times before they eventually start school and it becomes catch up with various parents during the after school pick ups. They often invited me to coffee mornings at various houses, however I declined to attend because of Thomas. They barely comprehended what it was actually like to get Thomas to sit still and not grab everything in his eye line. After a year or two they stopped asking and I noticed the mums who clicked having Christmas meals and coffee meet ups as their own little group and I felt sad.

Thomas’ school does various coffee mornings at the school for charity and I’ve never attended a single one! Not because I haven’t wanted to but because it always clashed on a day when I either had work, workman visiting the house, study commitments or I’ve just completely forgotten.

Don’t get me wrong, as parents we always smile and greet each other with a good morning and I’ve come to know a few of the mums when attending various school gatherings but it’s always a quick ‘hi’ before they turn and begin a conversation with the extremely chatty one of the mums and recently I noticed the parents even made a beeline for each other during the school nativity.

It’s odd for me as I’m a very social and friendly person so I’m struggling to understand why I’m distancing myself. I mean our children are likely to spend the next five years together if not longer. I’ve almost come to the decision that it’s the fear of the ‘meet the parents’ coffee mornings that I had at my daughters school. I wasn’t exactly like them, most of them were stay at home mums who’s husbands were the only bread winner. While I had to work to pay for my daughters after school activities, as that doesn’t come cheap.

I was very activity involved when Alana started school, but then Thomas was a baby. I’d volunteer to read with her during school, helping out on various school days and I enjoyed that school involvement. As Thomas grew older, it’s not easy to volunteer for anything.

My aim for 2017 is attend at least three coffee mornings at his school and attempt to make the other parents realise that I am one of them! I’m not one for chit-chat so maybe I should just learn to accept it as a necessary evil!

 

Getting out of the house

It’s Monday, Thomas’ older sister is out for the day with Grandma so it’s easier to give Thomas 100% of the attention. You’d think he would relish in having the two of us answer his every whim! But oh no, he’s just not in the mood today!

Although we’ve manage to make it through the day without a melt down, the shouting has been louder and more consistent.

So I treated myself to a black forest hot chocolate in an attempt to block out the tuts and the stares as he continued to shout and scream around the town. The Post Office with its self service tills and queue of annoyed customers, were by far my favourite.

It’s hard enough to get his chair around the small building anyway without the elderly customers attempting to squeeze through the small gap to get around us without Thomas grabbing their shopping bags, coats or whatever happens to come into his grasp.

We find ourselves constantly apologising for Thomas’ behaviour when he doesn’t actually understand and we’re the bad parents!

The Holidays!

Decorated Christmas tree closeupI don’t know about you but a lot of my friends relish in the excitement that the holidays bring! I love Christmas, it’s the time when I get to spend time with my family.

Thomas however struggles with Christmas Day, he finds it a little overwhelming and his usual smiley approach is covered with a confused frown.

We try our best to keep his day as usual as possible, breakfast is as usual, then it’s stocking presents before lunch and then tree presents after. We try and pace out his day.

As a family we want to enjoy the time together, but already Thomas is frustrated and I imagine will be wanting to go to school tomorrow. Now I’m feeling a little guilty for not putting him in the school holiday club for a couple of days! Should I? I mean it’s an expense this time of year that we can’t really explain.

It’s two weeks of his life! The six weeks in the summer you can understand my reasoning for putting him in childcare. It’s always a struggle. But his epilepsy isn’t easy for people to understand and the last couple of times he’s been, they’ve had choking incidents, even though they are aware they he needs small pieces, no fruit and support with eating!

Instead I get awkward excuses like they are shocked to learn that he choked on an apple or a biscuit! By all means give him biscuits, but he will push as much into his mouth as he can so you are best to pace him! These are people that we leave him in the care of and it’s written over his files that he struggles with eating! I mean what if he had an allergy to apples and they gave him some!

So you’d forgive me for not wanting to return him just yet…

It’s not easy but it’s worth it!

I’m always unsure what to write when it comes to my blogs, as first entries. I’m no stranger to blogs as I’ve been blogging for over 10 years.

This is a different kind of blog. This is about being a mum to a disabled child and how the dynamic of our family is affected on a daily basis.

As the title suggests. Thomas is a little bit cheeky! He’s full of beans, smiles and noise! Oh yes! His little voice can quite easily be heard across the whole supermarket! If I lose my husband, just listen for the sound of Thomas either screaming ‘A’ after his sister or ‘Mama’ for me.

But it comes with the constant stares, flinches and sometimes comments by the poor shoppers we encounter. He’s harmless really but he can’t talk, so in his mind the louder he shouts the quicker we reply!

We’ve learnt this last year that Thomas loves us being a family, in fact he doesn’t quite feel himself if one of us is missing from the dynamic. That isn’t helped by me working an evening job and sometimes arriving home at 3am! I often find him snuggled against my pillow when I try and sneak in.

Life with Thomas can be unpredictable. He loves school, he loves being around other children and studying what they are doing. He especially loves adult things he’s not allowed to touch, like cars, computers, washing machines, electrical devices.

He wants to be a proper little boy who walks out of school with his backpack on his back, his lunch box in his hand and his hand firmly gripping mine but in reality he his pushed out in his special pushchair, usually screaming out of excitement and unable to quite comprehend that he’s just not ready yet to be like the 11 year olds. Does he understand that, no! Will he ever? Time will tell but for now. Thomas is Thomas and it astounds me every morning how much enthusiasm is teacher and the teaching assistants have towards Thomas and the other children in his class. I am his mum but sometimes I love Monday mornings when he’s back inside the classroom and I’m able to sigh and clear my head for five minutes.

I love my time with my family, we all love Thomas but it’s hard. I don’t remember the last time I had a good nights sleep…