The Boy Who Hates Birthdays

I knew my daughter would wake excited and grateful for everything she had but I also knew that her brother would hate everything.

My son hates birthdays. He hates Christmas and Halloween and Easter too. In fact there isn’t a single celebration or occasion he does like!

He woke up at his usual mega early time and screamed for the television to be put on to Cbeebies.

He then screamed for his breakfast of sausages, mash and spaghetti that he has to have but never touches. He pinched me and yelled at me as I dressed him in his school uniform.

I tried to wish him a happy birthday but he yelled and pushed me away. I pinned a birthday badge on him and he ripped it off again.

His wrapped presents stayed untouched where I had put them the night before. If left to my son they would never be touched as long as he lives. It breaks my heart.

I sent birthday cake into school with him knowing he would not even care. I did it anyway, for me. I just can’t let his birthday go by and not do anything even if he doesn’t care about it.

His sister cannot understand why her brother is not interested in birthdays and Christmas. What child does not want lovely new toys and gifts?

After school she helped me unwrap her brother’s toys as we were screamed at and pinched.

He was playing on his iPad and watching YouTube on another iPad and he was angry we were doing something different to the norm.

As fast as his sister and I unwrapped a gift Isaac grabbed the item and the loose paper and stuffed them back in the gift bag we had just got them out of.

9 years now we have tried. He still hates it all. I am seriously thinking of not getting him anything for Christmas as he hates it so much and it just distresses everyone.

But then I just can’t. So we will go through all this again on Christmas just like we did on his birthday.

Nothing will be opened. Nothing will be touched or played with. He does not care about any of it.

If I take Isaac to a toy shop all he wants is the automatic doors or the customer lift. Toys are of no interest to him.

He lives for his iPad but he neither needs nor wants a new one. He has no hobbies and his days routines never change.

I know he is happy like that but it still hurts. It hurts me as a parent when I cannot treat him. It hurts family when he rejects everything anyone tries to buy him.

It breaks his sister’s heart that he won’t even look at anything toy related and won’t even let her play with anything that was in his gift bag either.

I am dreading Christmas. Even if his gifts were unwrapped and set up he would still ignore them. Even if he had seen or played with a toy elsewhere he would still not touch it at home.

We have tried everything.

He is just content doing life the way he always has. He wants sausage and mash and spaghetti for breakfast that he won’t eat and he wants Cbeebies on that he never watches.

He wants his Bing Bunny and Woolly plush on his seat and his two iPads. He wants a bath at 6pm and the same story before bed.

Nothing should change. Nothing can change.

Birthdays and Christmas are not on his radar. They bring change he has no desire for.

I have a boy who hates birthdays and Christmas and I want to cry.

Please someone tell me I am not alone?

When Autism Requires You to Parent Differently

Autism has forced me to parent so different to how I expected.

That child you see sitting on the windowsill can’t speak. Despite appearances he is an anxious child who cannot cope with change.

On the day in question he could hear fireworks outside but could not work out where the nose was coming from.

He has severe learning differences so has no understanding of Guy Fawkes Night or any other celebrations.

He just hears different noises and sees the sky full of different colours and he has to watch, not for entertainment sake, but because he is anxious.

I tried removing him from that windowsill so many times but he was pinching me, screaming, kicking and pushing me away.

Parenting a child with autism has taught me to pick my battles wisely.

As long as he was supervised I figured he was safe to sit there. So I sat in his room and kept a close eye on him. I sat there and sat there as time moved on and he still refused to move.

Of course as time went on I knew he would be getting hungry but not even food (a huge motivator) would get him to budge from where he was while the noise and strange lights continued.

I was fighting a losing battle all because so much of what was going on that day was different.

I am so grateful that my husband was around and able to not only look after my other child but able to cook for the children too.

He set up my son’s meal as he always has it: on a table in front of his seat downstairs. As a seasoned autism parent my husband did everything by the book.

He came and told my son what he had made (something Isaac loves) and even said ‘first dinner then back to window’. That usually works but that day was different.

I suggested taking a photo of his meal which my husband did and brought that up to show our son. Isaac still screamed.

Isaac was not being badly behaved. His refusal to move was not disobedience or hot headedness. He was not being naughty despite how many would view him.

His anxiety meant he physically could not cope with leaving the windowsill even for ten minutes to eat.

So I took his meal up to him. That’s when I took the photograph.

It was one night and I knew that. I don’t know what had went on at school that day with my son (when your child is nonverbal you have no way of fully knowing even with a home-School diary) so there could have been more than just fireworks making my son distressed that day.

He knows we eat downstairs and generally we do not allow food upstairs. He knows we do not eat sitting on windowsills in our family and he knows he should do what his parents ask.

However autism means that there are times when anxiety or sensory needs mean my son is completely unable to think rationally and I have to understand that.

Every other day since then he has eaten downstairs with the rest of the family. Forcing him to do so on November 5th though just was not going to work.

My child is different. He has severe sensory needs, anxiety, communication difficulties and learning difficulties. He has autism.

Parenting a child with autism is not the same as parenting a child without autism. My child is different and therefore I need to parent differently too.

Some days that looks like a child screaming in public and not being told off. Sometimes that looks like a child going to bed fully clothed as they refused pyjamas.

Sometimes that looks like the photo above of a child having dinner sitting on a windowsill.

However that looks to you that is ok by me. I get it and I hope by writing this it helps others ‘get it’ too.

World Toilet Day

How often have you queued, crossing your legs, or reminded your young children to cross their legs while you wait your turn to use the toilet?

How would you feel if you saw teenagers (for example) coming out of that toilet, giggling and messing while your toddler has soiled themselves waiting.

You’d be pissed off, let’s be honest, you’d be probably so annoyed that you may even snap at those giggling teenagers for mis-using the toilet. Would you report the abuse of the public toilet?

But realistically, you don’t face this type of situation when using public toilets.

How often have you had to clean the toilet seat before using it?

How often have you told your kiddies not to touch anything in the toilet because you know it’s dirty and used by the general public; but imagine you don’t have a choice, there isn’t another toilet next to this one, and this is the only toilet you can use. There is no line of similar toilets to choose from.

Imagine if your child sat on the floor of that toilet while you cleaned the seat, you wouldn’t allow it and you’d be right – can you imagine the amount of germs on the floor of that public toilet?! Yuck.

The toilet itself suits your needs; you can reach the toilet seat and the toilet roll.

It’s small but there is only supposed to be one of you in there, so when you’re without your toddler it is suitable.

Baby changing facilities are located in the disabled toilet. You need to change your baby, your toddler needs the toilet and you’ve a buggy plus shopping bags with you.

The only toilet available to you is the disabled toilet. One singular disabled toilet, used by many, many people.

You’re not disabled, nor are your kiddies but there is no way you’d consider changing your baby on the ground. (Nor should you have to.)

There is no family toilet. A family toilet would be much more suitable to your needs; room for buggy, baggage, a place to change your baby and have your toddler in the room with you.

Family toilets are often incorporated into disabled toilets.

This is not your fault. This is what disabled toilets for years have always been, a place to change your baby and help your young child go to the toilet.

Imagine your baby isn’t small enough to change on your lap. Imagine your baby isn’t small enough to fit on the changing table in the disabled toilet.

Would you then place your baby on the ground of the toilet to change them?

Luckily for you, when your baby is too big to use the changing table, the toilet becomes suitable for your child to use.

Imagine if your child could never use the toilet?

Imagine if your child could not go to the toilet independently and needed some help.

Imagine if the disabled toilet that you queued for, hadn’t even the basic hand rails to help your child use the toilet.

Imagine if you had no choice but to lay your child on the floor of that public toilet.

Imagine if you had to wait so long to use this toilet that your child soiled themselves and their wheelchair was now wet, a chair that they have to sit in regardless of it being soiled or wet.

Imagine you see a young mother coming out of that disabled toilet with her buggy, bags and her toddler.

Imagine how angry you would feel that disabled toilets are still catering to her needs rather than your child’s needs, your child who has a disability.

You’re not angry at the mother, let me be crystal clear about that.

Why do young mothers have to use disabled toilets? Because like us (parents of children with disabilities), they have no choice. There isn’t another family toilet for them to use. They have a baby, a toddler and a buggy, they need a safe big space to change their baby- a disabled toilet isn’t that space but a disabled toilet is all they have.

It’s time to change that.

It’s time for family rooms.

It’s time for proper equipped disabled toilets, used by the disabled community only.

Family rooms should be there for all types of families; kiddies with autism who cannot handle the rush of the average toilet cubicles.

Family rooms should be open and readily available for all types of families so they don’t have to apologise or feel guilty for using disabled toilets.

I’ve campaigned before for better equipped disabled toilets and for the abuse of these toilets to be noticed and corrected but it seems to always start a debate.

This time I’d like to campaign for family rooms and to have our disabled toilets fitted with hoists, changing benches, handrails …. So that those who need help to independently use the toilet; can. And for those who need a career or parent to help them use the toilet; can and that the carer or parent do not have to use the floor as a changing bench.

Family rooms are needed, there is no denying that.

Disabled toilets are needed, there is no denying that.

A baby changing table in a disabled toilet is not a disabled toilet it is in fact more in line with a family room.

I often wonder why the disabled community are so overlooked when it comes to basic human rights; a disabled toilet that caters more to the parents of young kiddies rather than those who are physically disabled makes my blood boil.

This is not about hidden disabilities, this is not about the abuse of the disabled toilets (despite how often we witness this) this is about making a disabled toilet suitable for those with physical disabilities.

It is time to get annoyed about it.

It is time that those who have disabilities can go out into their communities knowing that there are toilets suited to their needs, just like everyone else when they go out.

It’s time to separate family toilets from disabled toilets.

It’s world toilet day; if we can’t say what we mean today, when can we?

The Life of a Carer

They then look at her and then back at me and you can see the cogs turning.

My daughter’s disability is in her muscles and her internal organs, you wouldn’t necessarily realise she had a disability with a quick glance.

Then the questions and statements come;

– All babies need a lot of care she looks fine, so why are you a carer?

– So is she going to die?

– How can she be disabled she is a baby, carers are for the elderly?

Generally I am fine with answering these questions with a sweeping statement about how her nerves and muscles randomly stop working, that her kidneys and heart are failing and no one can give a reason or an answer, that actually if you look more closely she does have physical deformities.

We don’t know if it is life limiting but as long as she is smiling I am smiling.

I just wish people knew how hard it is to be a carer to your own child. My diary is full of appointments with different therapists, different consultants, and different hospitals.

I am used to worrying with my other children; when should I change to normal full fat milk in the bottle, my son only said 5 words to his friends saying 10, and what shoes won’t scuff when we go to the park etc.

Now I worry about when and if my daughter will; walk, stand, talk or ever eat independently.

I now know so many words that even google struggles to find helpful websites for, usually it just churns out research paper links.

I now know that being a parent is such hard work, and yet being a carer and a parent is a different kettle of fish.

I have learnt that as a parent, you just seem to find this strength from within to be a Mama bear, who will protect her cub against the world.

Nothing could have prepared me for being carer, I would have thought being a carer to a child was no more than being a parent.

However now I am on the carer path I know that there is a difference, I am still a parent, however I am also a carer, both I put my all into and both come with their own challenges and stresses.

Let’s Talk About Epilepsy

Epilepsy is a neurological disorder associated with abnormal electrical activity in the brain.

It can be caused by a host of factors: genetic anomalies, infections, structural changes in the brain, head injuries, strokes or tumors.

Chances are, you know someone with this disorder, as 1 in 26 people in the US will develop it at some point in their lifetime.

In our daughter’s case, even though we knew she was predisposed to it due to a genetic condition and a brain malformation, her diagnosis at 11 months old brought sorrow and anguish.

With November being Epilepsy Awareness Month, I wanted to share a glimpse into the world of loving someone with Epilepsy.

Seizures can strike at any time; they can strike anywhere. We’ve witnessed our child go nearly two years without a seizure, thinking she had outgrown them, and then we’ve seen them return with a vengeance.

There are seizure triggers that we’re aware of (full moons, fever, lack of sleep, anxiety) and then there are seizures that occur with no rhyme or reason.

There is no statement more accurate than “You never know how long 30 seconds is until you witness someone you love having a seizure.”

With every type of seizure she endures, we are devastatingly frightened; petrified by her shallow breathing and dusky coloring. I’ve seen every muscle in her little body convulse in a terrifying rhythm.

No matter how many episodes you watch your child endure, you never get used to it; it NEVER becomes easy.

Time stops. My heart breaks. I shake with fear. I am angry. I pray for the life to come back into my child.

This roller coaster of emotions whirls inside me, all the while I have to remember to time the episode, administer her oxygen, keep her on her side and to remember to breathe myself.

I am lucky to have a husband and a son who keep a calm, level head during these times of distress; as we are thrust into Team Seizure mode.

You learn that you can never completely let your guard down when Epilepsy is part of your life.

You never know when you may have to call for an Ambulance and administer rescue meds that drastically slow down and potentially stop breathing.

You never know when a cluster of seizures may happen, sending you to the hospital. You learn to function after sleepless nights and you attain the ability to sleep with one eye always open.

We find it challenging to leave our daughter in anyone else’s care (except her wonderful teachers and loving grandparents.) Epilepsy limits our family’s freedom, and steals “normal” family experiences from us.

Despite the fear that we live with every day because our precious daughter has Epilepsy, we also live with HOPE.

We’ve seen much success in her seizure control with adding natural CBD oil to her treatment plan.

So many of the prescription anti-epileptic medications can cause severe personality changes, rage, lethargy, kidney damage, and more.

We have a Neurologist that is extremely supportive; she is on board with our displeasure of pumping multiple medications into our child that have many known and horrible side effects.

Together, we work as a team to treat her seizures as effectively as possible, while striving to give her the best quality of life. Epilepsy isn’t a topic that most people are comfortable talking about.

As it’s a part of our life, and greatly affects the life of our daughter, we will continue to talk about it and hopefully impart knowledge and awareness along the way.

Feeling the Pressure

It has been an eventful few months and for once the crisis wasn’t Sam-related. This time, it was me.

I like to think of myself as a cautionary tale for other people, an example of what not to do if you will!

I promise it’s not done deliberately, but this past two years I do feel that I’ve had more than my fair share of health issues over and above the usual coughs and colds.

It does, however, serve as a reminder as to why basic health check-ups are so incredibly important – yes, I know parents are incredibly busy and it’s all too easy to forget to look after ourselves.

I won’t bore you with the details other than the key facts; in July, my eye became very sore.

Pharmacist, GP and optician all agreed things needed looking at, so sent me off to the eye clinic at the hospital for a thorough eye check-up.

6 hrs later I had an urgent referral to neurology and was awaiting a CT scan as my optic discs (the point where the optic nerve joins the eye at the back) were swollen.

I was diagnosed with idiopathic intracranial hypertension (IIH), a condition where the pressure in and around the brain is too high.

While going through my history, all the little niggles that had plagued me for months suddenly made sense – more frequent, excruciating migraines; waves of nausea on moving together with being physically sick on occasion.

Awful pins and needles in my hands and feet. Extreme tiredness that I’d put down to life and being busy at work.

And the strange, rippling/tingling sensations that I’d been getting across my head, face and into my back.

I’d never heard of IIH before, and yet a simple eye test had been the key to identifying the condition, before it destroyed my vision.

I know we’re all very busy but please, make sure you keep up to date with GP check-ups, eye tests and the rest. Use me as a cautionary tale.

And remember that you have to be in the best of health possible, in order to do what’s needed to fight the battles our kids need us to fight on their behalf.

Special Needs Families: A New Baby

The other night I held our youngest son and cried. Our lives are about to change.

His life is about to change. His life that I have tried so hard to give him all that I can.

For the last 4 years he and I have been inseparable. Yes, we have other children, but he and I have a very special, different relationship.

He’s the reason I stopped working outside of the home and now work harder than ever as his caregiver.

I take care of all of his activities of daily living, schedule his appointments, visit with specialists and therapists, and give him an insane amount of kisses and hugs every single day.

I am far more than his mom. I am his advocate, his cheerleader, and his voice. He’s my baby. And in a little over a month, he will be a big brother. And I would be lying if I told you I wasn’t a little bit sad and nervous for this change.

Yes, we are excited. Yes, we know how much joy this new little bundle will bring our family. But yes, we are a little anxious too.

I held my 4 year old “baby” and as I looked at his sweet face the tears just began to fall. Change is hard and this change will definitely be a large adjustment for us.

He will no longer have me all to himself all day long. He will no longer be the only little person I have to care for while his brother is gone at school all day long.

My tears were tears of worry and fear.

Thoughts of managing all of his cares and the cares of a newborn started to overwhelm me.

My tears kept flowing as I told him I would do my very best to continue to keep his quality of life at the top of our list.

I told him that I will always and forever fight for him, advocate for him, and be his voice when he needs me. I promised him that the kisses and hugs will never decrease.

And as my tears kept falling he continued to do two things; he smiled at me with a twinkle in his brilliant eyes and pushed his lips onto my face to kiss me over and over.

He was telling me to stop worrying. He was telling me that it will all be ok.

Yes, our lives are about to change but if anyone can do it, we can.

We’ve come this far and as I looked at his sweet face I wiped my tears and realized that as much as our lives will change, our lives will also stay the same.

As much anxiety as I have about adding to our family I also have the same amount of excitement.

My advocacy, fierce love, fight, and never give up attitude won’t change – I guess the only thing that will change is how full my heart is.

5 Ways to Keep Warm in a Wheelchair this Winter

1. Blankets are great to keep legs warm but they can be annoying when they fall off.

So, invest in a good quality wheelchair or buggy cover which will be designed to stay in place.

Opt for one which is fleece lined and waterproof to ensure legs stay dry if you are caught in the rain. Like this one from Willowbug!

2. Stock up on foot or hand warmers

They are great and would be ideal for wheelchair users who suffer from cold feet.

They stay warm for up to 6 hours so perfect if you’re heading out somewhere cold for the day.

3. Wear a hat

Although it is a myth that we lose most of our body heat through our heads, wearing a hat is still a great way to keep warm!

But if your child is anything like mine, you might find hats are hard to keep in place.

Opt for a hood instead – either on a hooded jumper or on a coat, it’ll do just as good a job and can’t fall off!

4. Layer up

I’m sure it wasn’t just my mum who used to tell me to put another jumper on when I was cold?

Wearing a few layers will always keep you warmer but taking them on and off of a disabled child is not always easy.

Arm warmers, leg warmers and even a Harmaki tummy wrap might be a good alternative solution.

5. Wear gloves or mittens.

Keeping hands warm is always going to help with keeping your body warm.

It can be difficult to get gloves onto William’s hands so I opt for mittens or sometimes use long socks as gloves as they come all the way up to his elbows keeping him extra warm!

Slot Machine Heaven

One loves soft play, watching lifts, his iPad and loud noise while the other loves playmobil, staying at home, lining up and ordering and peace and quiet.

The combination makes finding places both my children enjoy rather difficult.

Sometimes I get it very wrong, like the time I tried to take them to a museum or the time we attempted the circus. Both were absolute disasters.

Even a trip to ASDA has one escaping to the lifts and the other on the floor in pain at the level of noise and brightness of the lights.

So it was with a little nervousness that I ventured to the local theme park with them one wet afternoon.

I had no intention of even trying the outdoor attractions as neither of them cope at all well with rain or being cold, but I hoped we may get at least half an hour in the family restaurant or the soft play.

It was so bright and loud and busy as I took the children in and I really thought I would be walking right back out. Sometimes life is full of surprises though.

My son, who may have significant learning difficulties but who remembers every place he has ever been, did a bee line for the soft play and his sister and I had to chase him at speed.

There was no point calling his name as he never responds anyway.

We finally caught up with him at the gate to the play area. I thought I had better inform the staff that at 9 my son is completely nonverbal but that he would still be fine to play.

They surprised me by saying it would only be a pound for him to play. I don’t expect my children to get special treatment just because they are disabled but I also am not going to refuse a bargain either!

Now I had the difficult task of finding something to do with my timid, anxious daughter while her brother ran off some of his energy.

We walked around at all the bright and noisy machines full of flashing lights and repetitive tunes. They repelled her as strong as putting two north poles together on a magnet.

I suggested we had some cake and a drink in a quiet area but just then we walked past some slot machines and my daughter stood watching someone play totally mesmerised.

She loved seeing the machine slide in and out, she loved watching how you could time the coin to fall right where you wanted and she was thrilled when the person knocked a few 2 pences into the tray beneath.

I dug in my pocket for a pound coin and exchanged it in a change machine for 50 2 pence pieces.

I suggested she should try having a go. Like everything else she does she took each shot with precision, planning and excitement.

Each coin brought her so much enjoyment as she timed that machine to have it fall right where she wanted and then watched those sliders move in and out knocking coins down to the next level and sliding in and out again.

She jumped with joy at every coin that fell into her tray as she realised she could use that coin again to continue playing.

If I thought she was excited to earn 2p I had no idea what was coming next! The machine did something even I was unaware of: it started churning out tickets as well as coins!

Now this took my daughter’s joy to a whole new level!

I never in my windiest dreams though my daughter would find two pence slot machines so enthralling! She was in slot machine heaven!

For an entire hour I watched as she concentrated so hard on that machine. For the grand total of two pounds she had so much entertainment and so much fun!

She accepted totally when the coins run out and sat excitedly as she counted up her winning tickets.

She loved feeding the machine her tickets and getting a receipt for her amount. I then took her to the collection point and she carefully chose a toy in exchange for all her tickets.

We collected her brother (who I could see playing the whole time my daughter was at the machine) and returned to the car to go home.

I learnt that afternoon that entertaining children does not have to cost a lot of money.

I had taken both of them out on a wet afternoon and only spent three pounds but more importantly I actually found a place where both my children with autism can be happy, entertained and be themselves.

I don’t normally condone gambling but I know we will be back to let my son play and my daughter experience her slot machine heaven again soon.

I have started collecting all my 2 pences already!