Is a Diagnosis Really Important?

Well, yes. But why? Why is it so important that a child is given a diagnosis when they have disabilities when all you hear from people is that a label won’t define their child?

In fact, I say it myself!

My son has quadriplegic cerebral palsy but it absolutely won’t define him, despite his disability he does not “suffer” and he is the happiest little boy and brings so much joy to everyone’s life’s around him!

But if someone told me that a diagnosis didn’t matter then I would absolutely argue that it did.

My son wasn’t diagnosed until he was over a year old and as a parent, the worry I went through before I knew that he had cerebral palsy was exhausting. Exhausting maybe isn’t the right word but that’s how I felt most of the time!

The battle to get answers takes almost everything out of you and you just want to scream at people when they say “does it really matter??”

Of course, at the time you probably say something along the lines of “well no I guess not, as long as their happy!”

However, that’s not true at all because not knowing is absolutely heart-breaking. Your child isn’t reaching their milestones or maybe acts in a way that you know isn’t right but no one knows why.

You want the professionals to be doing more to find out what’s going on but there always seems to be a delay in the research with this.

Just as frustratingly, others don’t seem to understand your need for a diagnosis, because it doesn’t change the child does it?

Other than a doctor giving your child a label, which no one seems to want anyway so… it’s confusing right?

And I think it’s something only parents of children with disabilities or additional needs will fully understand.

Because when your child finally gets that diagnosis, all of a sudden you feel less anxious wondering “maybe it’s just me? Maybe this is normal? But I know it’s not!

Is it something I’ve done? I wish I had an answer for people when they asked me what is “wrong” with my child”

Also, the care plan can totally change! Medications can change and referrals can be made.

Before my son was diagnosed he was seeing no one other than his paediatrician.

After his diagnosis his paediatrician changed, he seen a physiotherapist, occupational therapist, play therapist, portage worker, speech and language therapist, orthopaedics… the list goes on.

See how that diagnosis mattered?

There are still many families who don’t have a diagnosis and I honestly hope you find answers soon, I had a year of not knowing and I couldn’t bear to think what I would have been feeling had it been any longer.

So next time you tell someone that it doesn’t matter if their child has a diagnosis or not, please don’t because it really does.

Don’t Compare

Any time a mother of a child with additional needs or a mother of a premature baby asks if I have any advice for them I ALWAYS say “don’t compare”.

Something I wish I had followed myself when my son was younger.

It’s something we all do when we have a child, you look up what they should be doing developmentally for their age and compare your child to what you are told is “normal” for them to be able to do.

You look at your friends’ babies or babies of mothers who you maybe go to groups with or your online birthing board and compare your child with others the same age. There’s always one who claims that their child is sitting up and talking in 3 different languages by 4 months old isn’t there!

All joking aside though, it’s something that can really make a mother feel low and doubt herself.

When my son was born over 9 weeks early I knew straight away that he would take a bit longer than a child who was born full term and I was constantly told by various different people that I was to go by his “corrected age” for milestones, so base development as if he was born on his due date.

I tried so hard to do this but I have to admit, I constantly compared him to other children, I seen other babies smiling at 4 weeks old and I longed for that little smile back at me for so, so long. When he did finally give me that first cheeky little grin at around 15 weeks old I think I actually cried, it was the most amazing thing! I was reassured.

Yes, he was born early and I’ve nothing to worry about… So, I stopped comparing for quite a while but it all started back up again when he was nearly a year old and still not sitting up, not even close.

Even going by his due date age this was considered “late” for this milestone and then when I really thought about it, he wasn’t doing quite a lot of things that I had read and been told he should be doing by this age, he wasn’t rolling over, he couldn’t play with his toys well as his hands were always clenched, he didn’t attempt to army crawl or anything like that.

Panic started. Why is he not doing these things? What’s wrong? Any time I mentioned it to people I was told things like

“Oh, there’s nothing wrong with him, I can tell by just looking at him!”

“Don’t worry, he’ll catch up soon”

“He’s just taking his time, he had a hard start, honestly ALL babies get there eventually”

Deep down I just knew, my mother’s instinct was telling me something different and I just couldn’t wait and do nothing about it. That is the day that my confidence and determination to get answers grew to a point where I never thought possible!

I had always been someone who was shy and quiet… This person had been replaced by a fighter. And I really did have to fight, but we eventually got the answers we were waiting for.

He had an MRI scan which showed something called PVL and he was diagnosed with quadriplegic cerebral palsy and he may NEVER sit up or walk. Now that, I don’t believe. But I’ll write about that another day!

Honestly, even now, I still find it hard sometimes when I see babies years younger than my son achieving milestones that he’s yet to achieve. I put on a brave face but often get a bit of a lump in my throat when I see that he’s still not doing these things.

However, I just need to look at him to see how far he’s come, he’s even more determined than I am to reach his goals and the amount of hard work he puts into physiotherapy each day is inspiring, plus he has the BIGGEST smile I’ve ever seen on someone.

He has already proved professionals wrong by reaching so many milestones that once seemed impossible.

I wish I hadn’t compared him to other babies/children so much when he was younger but maybe if I didn’t then I wouldn’t have gotten the answers we needed when we did, or maybe I would. I’m not sure.

One thing I will say though is if you do compare then just don’t let it take over your life, enjoy the moment, enjoy the journey, even if it’s a tough one then make sure there’s good times too because there’s nothing more valuable than smiles and laughter in life.

It’s OK Not to be OK – But Not to Stay That Way

It’s World Mental Health Day… but what exactly is mental health? A quick search on Google would tell you that it’s “a person’s condition with regard to their psychological and emotional well-being”

Did you also know that 1 in 4 of us are affected by mental health?

That means that if you’re reading this blog then it’s pretty likely you’ve been affected one way or another, whether it be yourself or maybe a close friend or relative. What’s worrying is that 2 in 3 people suffer in silence.

There is SO much help out there for those suffering, it could be anxiety, depression, PTSD, stress, anorexia, bulimia, worry, withdrawal… the list could go on and on because there’s so many conditions and also so many people out there that can help.

It doesn’t even have to be a professional, it could be opening up to a friend. Talking about it is the first step. But I’m going to be completely honest in this blog post with regards to myself and I feel almost unworthy to write this blog saying how important it is to get help when I’ve never looked for any help myself when I have suffered.

When people talk about having a child they talk about the joy it brings, how much closer it will bring you as a family and how your life will be complete. But that’s not the case, in fact, it’s very rarely the case.

Having a baby can cause a huge deal of stress, tension between you and your partner, it’s a constant worry that you’re doing everything you should do and a constant comparison between other parents and children, you have to learn to juggle your whole life and to do that while keeping your mind in a good place is really pretty difficult!

When my daughter was born I actually did ok and was really happy, we had my second very close after and when he came prematurely my daughter had to stay away from us during the week and come home at weekends so I could spend my time in the hospital with my son.

That was TOUGH, during this I found out I had thyroid issues which effects all your hormones and THEN my son was diagnosed with quadriplegic cerebral palsy. Looking back, I don’t know how I managed to keep the appearance of being completely ok when I really wasn’t. I so wish I had opened up and spoke to someone but there’s still this need for showing the rest of the world that you’re ok!

You feel like a failure when things go wrong and no one likes to admit that they aren’t coping.

This is why having a day to raise awareness for mental health worldwide is SO important. We need to open up. Everyone has bad days but when those bad days don’t seem to get any better – then talk to someone.

Make an appointment with your GP, they won’t think you’re being silly (as I had previously thought!) If you feel like you can’t do that then talk to a friend, open up. No one will think any less of you and the quicker you can speak about how you’re feeling then the quicker you can make the steps to getting better again.

Don’t be ashamed of your story, it may even inspire others to seek help when they need it.

 

A Letter to All Special Needs Mums

Dear special needs mum,

Did you ever think you would be known as that? “The mum with the child who has special needs”

I certainly didn’t…

That’s what other people see but I’ll tell you what I see when I see you.

I see the occupational therapist having to sort out all the equipment and researching to ensure that your child has everything they need.

I see the physiotherapist doing daily stretches and exercises even though your child cries through it and your back is sore.

I see the play therapist using toys, sensory items and books to try and teach your child new skills and understanding and letting them learn through play.

I see the nurse administrating different medication daily at certain times of the day ensuring each dose is correct.

I see the specialist, researching and finding out everything there is to know about your child’s condition.

I see the speech and language therapist working out different ways to start or improve eating, drinking and talking.

I see the carer, who has no other choice but to be organised at everything, not one mistake can be made when it comes to your child’s health.

Your social life is constantly on hold because let’s be honest, you can never truly take a break and relax.

You have to juggle appointments. You often get very little sleep but there’s no chance of a nap or any time to catch up on that.

But you never complain.

It’s your child so you don’t do all of this because you have to but not necessarily because you want to either, you do it because you would do absolutely anything for your child, the love between a mother and her child is like no other.

When that mother has a child with additional needs, that love grows to enable her to become more than a mother, to also become all the professionals involved with that child.

You put on a brave face because your child does, and if they can go through everything they have and still come out smiling then you think “so can I!”

There are many hard days but there are also good days, you didn’t choose this life but it’s yours and you’ll do it all again tomorrow.

What Goes Up Must Come Down

It’s true isn’t it, what goes up must come down.

That includes feelings too.

One of my social media friends put a post on recently asking if any other special needs parents ever felt down the day after a good day.

I was like, “Me, me, me!!”

I didn’t think anyone else ever felt like that so never brought it up or mentioned it, I thought it was really silly so I buried those feelings.

But after that post, I wondered how many other parents feel that way?

For example, my son has quadriplegic cerebral palsy so he can’t sit up, stand or walk without any support but recently he’s been doing so well with his sitting positions, he managed to sit on the stairs himself with his big sister and sing and I was SO proud, this is a huge milestone!

We were all on a high that day, laughing and praising Wilson’s amazing achievement of not only being able to balance himself on the step but also doing some actions to a song with his sister!

I couldn’t stop talking about it all day and I took videos too that I shared for everyone to see.

Then the next day I woke up and just felt a bit low and this seems to happen every time after something incredible is achieved.

I’ve been trying to work out why but I haven’t quite come up with an answer yet but I think I’m pretty close.

I think it’s because when something big happens, you’re in the moment and the pride you feel is just like no other and when the next day comes it’s like reality hits you.

Although that milestone was achieved, there’s still that feeling of sadness and guilt that if there were no disabilities involved then your child would be able to do all these things anyway.

I feel bad for even writing that down but it’s true.

Like my example I gave of my son sitting on the step, as incredible as it was (and I’ll not take that away because it really is amazing) he still can’t sit without support, people will see the picture or the video of him sitting and comment how amazing it is that he can do this without support!

But I won’t write down that I wouldn’t be able to leave him, I have to still help him with his balance or he will fall and he still requires support 99% of the time.

I hate being negative and I try my best to see the positive in every situation but I felt like I had to write this down, to let other parents know that they aren’t alone in feeling that awful low after that amazing high.

I Don’t Know How You Do It… 

Something many parents of special needs children hear from friends and family is, “I couldn’t do what you’re doing,” or, “I don’t know how you do it!”

You probably just smile and awkwardly say something like, “I wouldn’t change it for the world!”

The thing is, I know that’s a lie.

I know you would but you rarely openly admit it because doesn’t that make you a bad person, for wishing your child was different?

NO!

Some days are good and some days are bad.

Sometimes you feel like a superhero because everyone is happy AND you have done the housework, or you have gone to work and still managed to make a home cooked meal for everyone.

But some days you can’t seem to get anything done, everyone is crying (including yourself!) and you don’t know where you went wrong, you receive a phone call because you missed an appointment and you don’t know how things will ever get better.

When you first become pregnant you never, ever expect for your child to have a disability, no one ever does and it’s very rare that you are prepared for that to happen!

So, wishing that your child was different is totally normal and it’s not a bad thing, your child having a disability is never what you expect and as a mother or father, you just want the best for your child!

When someone tells me that they could never do what I do I honestly never know how to reply because every time I think, “Yes, you could!”

Because you would have to!

You learn.

When you have a child with disabilities you learn to be the voice of that child, you learn how to organise and plan because you have to with all the appointments and medications you need to remember but most importantly you learn patience.

Patience is key and when you’re having a day that your patience is running low that’s when things seem to go wrong.

But that’s OK, no one is perfect.

Next time someone tells you that they couldn’t do what you’re doing, just know that they are just trying to say the right thing, but just be honest, tell them you cope because you have to!

And having a child with disabilities isn’t all bad, like I said above, it teaches you to be a better you.

It can also bring you so much joy.

When my son smiles at me I feel like all my problems just melt away, when he achieves something new, no matter how small then I feel like we are on top of the world!

If no one has told you already today, then you are doing a great job.

I COULD do what you’re doing, because I do and we don’t have a choice.

It’s not always easy and we all know that but it’s also not always hard either, you got this!!

Guilt.

Something I feel at least once every day.

Actually, who am I kidding here… SEVERAL times throughout the day, every day.

I can’t be the only one that goes through the day once my children are in bed thinking “I should have done that” “I maybe over-reacted there” or one of my favourites “I wish I had done more today..”

But guess what, I know for a fact I’m not the only one that does this, it’s not something often talked about but it’s something every mother feels every day.

It’s what makes us good mums believe it or not!

We feel guilt because we care.

There is rarely a day where I don’t think I could have done something different or handled a situation differently or done more.

2 examples from today are:

1. my daughter asked for a plaster because she has a little paper cut on her hand, I had already given her 2 plasters which she had peeled off so I said no, she got really upset.

Why didn’t I just give her another plaster!? A question I’m currently asking myself as I write this and;

2. My son kept asking for me to fly him like a superhero, I had already done it so many times and my back was getting sore so I had to say no and with 2 small children, one of which that can’t sit up or walk, I need my back to be intact so I’m pretty confident that it was the right decision but it won’t stop me feeling guilty about it, he was having so much fun!

This is the point in a blog where you’ll usually read something such as, don’t feel guilty because you’re doing your best and that’s all you can do!

Or, don’t feel so bad. As long as everyone is happy and healthy then that’s all that matters!

Both are true but I’m not going to say that…

Because I don’t think it’s necessarily a bad thing to feel guilt, it helps us.

We learn from our mistakes and as long as you are able to take a deep breath and move on from that guilt at the end of the night to start a fresh day in the morning then you’ll be alright!

Let’s face it, the things we often feel guilty about, our children will never remember!

Just don’t let it get you down, I try to have about 5 minutes once I’ve put my children to bed to look at their monitors allow myself to feel guilty about whatever thing it is that I feel guilty for that day and then move on.

Be assured, it’s normal to feel it but don’t let it take over your life, if you let it consume you then that’s when it really will affect your everyday life and no one should live like that.

Guilt can’t change the past and worry can’t change the future. Have your 5 minutes, tomorrow is a new day.

Ten Things To Do Suitable for Disabled Children (and their Siblings!)

Wilson is 2 and a half with cerebral palsy meaning he can’t sit up unsupported or walk, his big sister Ava is 3 and a half with no disability and I’m always trying to think up activities for them both to do together!

I’ve listed a few things below that we do which might be helpful, especially in the summer holidays!

Baking

This is my go to activity when it’s a rainy day!

I always try and keep things in the cupboard ready for days when we are stuck in the house, even if it’s just one of those box mixes, it’s something they can both do together.

A good one is Krispie cakes!

All you need is melted chocolate and Rice Krispies.

It gets messy and most of the mix ends up in Wilson’s hair but they both have fun and let’s face it, who doesn’t love to taste some cake they made themselves!

Pretend Play

This could mean anything pretend! It’s so good for children of all ages and abilities to learn through using their imagination.

Some of the things we like to do are playing cafés, Wilson pretends to take my order and Ava makes my food in the kitchen.

Or we pretend we are animals in a zoo, you’ll feel a bit silly at first but it’s good fun!

Wilson likes to pretend he’s a lion.

We also pretend that we are going to the shops or going on our holidays and we pack bags!

There’s so many things you can pretend to do at home!

Go to the Park

Your local park might not be very accessible, ours isn’t that great but I still always find something to do!

Even if it’s chasing Ava with Wilson in his pram, he finds it hilarious (and it’s good exercise for me ha ha!)

We also pick leaves and feel the different textures and smell the different smells!

Do a Singing Contest

Everyone loves a bit of competition!

If your child can’t talk/sing you could maybe do a dance instead and play some music.

I personally feel that nursery rhymes, singing, dancing and all music in general is good for everyone.

Play the right song and your mood can be instantly uplifted.

Let Them Think That They are Helping You

Children love to think they are helping (some of the time anyway!)

Ava and Wilson both get excited when I ask them if they want to help me do the dishes or making the dinner, general tidying they don’t find fun but something that they don’t often do can be exciting for them (as crazy as it sounds!)

I put Wilson in his standing frame which has a bowl in it to help me do the dishes, I fill it with warm soapy water and give him a couple of plastic spoons and a cup to wash for me while Ava stands up on a chair next to the sink helping.

Be warned – your kitchen will be covered in water!

For dinner maybe do homemade pizzas one night and let them put on their own toppings, they’ll love it.

My daughter is incredibly fussy and never eats the end product but loves to help make it so this is something you could do even if your child won’t eat it.

Make a Card for Someone

Just to say hello!

Both Ava and Wilson love getting the pens and the glue and all the crafty stuff out to make cards, even if it’s just for their daddy coming home!

Or if it’s someone’s birthday coming up I’m sure they would love a personalised card!

Cheaper and more fun to do.

Spend a Day Somewhere You have Never Been!

Not something you can do every day but it’s always fun to visit somewhere you’ve never been before!

I don’t drive so I’m always searching for places I can get to by public transport.

I found a good website called “day out with the kids” to find out what’s on near you.

Mess Free Painting!

This is a good one if you don’t like much mess!

Buy some large sandwich bags or something similar that can seal, although I put tape round the seal too just to be extra careful none comes out!

You can put some paper in and some different colour paints and seal the bag.

Let them squish all the paint together (you can even do this without the paper in just for some fun with textures!)

Once finished, take the paper out to dry and cut out a shape to make a nice picture

Pretend You’re making a Fitness Video!

Okay, I know this sounds super silly but it’s a great way to get your child to do some physio!

Ava loves helping too. So just be like “right guys! Let’s do some exercise! First put your hands right up and then right down!”

You get the idea, try make exercise fun, and I guarantee you’ll have a laugh while doing this one!

Act Out Books

Read a book and while you’re reading you can pretend you’re each a different character and make up a sort of play!

Or after reading a book perhaps think of activities you can do around that book such as drawing a picture or guessing what would happen next or play a memory game to see who remembers what’s happened in the book!

World Breastfeeding Week

It’s world breastfeeding week!

A week to raise awareness and celebrate the wonderful thing that is breastfeeding!

The most natural and beautiful thing for a mother and her baby.

So why is my picture on this blog not a picture of me breastfeeding my child?

Well, that’s my Breast milk in that little tube!

With my first child, I didn’t try to breastfeed.

I always knew I wanted to feed her formula, I don’t really know my reasons but that’s just how I felt at that time and that’s ok!

She’s now a very happy and healthy 3-year-old.

Then when my son was born prematurely I was told that to give him the best chance possible I was to express my milk.

Something I didn’t realise until the nurses told me that day was that your body knows that you have given birth early and your milk changes to care for your little preemie.

How amazing is that?!

Our bodies are incredible, really.

So, I expressed for my little boy and actually took to it quite quickly, I didn’t particularly enjoy being attached to a machine so I knew that as soon as he was ready then I would try and breastfeed him, I was excited for this!

But when we thought he was ready and I started trying to breastfeed him, he really struggled to latch on.

Eventually one of the nurses told me that this can be common in premature babies and maybe we should try a bottle… I felt heartbroken!

But at the time I thought to myself, if we wanted to get out of NICU any time soon then that would be the best thing to do!

Sometimes I wish I had persisted and then other times I’m glad I made the decision to bottle feed because he may never have learned to latch on! He did have my breast milk for quite a while which definitely helped him in those early days when he was so small and poorly.

When I think of breastfeeding, I think of the most natural thing for a mother and her baby.

Unfortunately, there’s still people out there that think that breastfeeding a baby should be done in private.

There’s also some people that think this is “disgusting” (I struggled to even write that down because I honestly can’t believe it…) yet, when you visit a farm and see a cow getting milked, what do you think?

Probably not a lot!

Or a pig feeding her little piglets, you probably think “aww so cute!”

So why, when a human does it, does it become something we have to question?

I didn’t breastfeed but I did give my premature baby my breast milk and for that, I am extremely proud of my body.

I fully support mums whether they decide to breastfeed or bottle feed, but it does break my heart when I see someone looking nervous as they feed their child in public!

It should absolutely not be this way at all, we all eat in public so why shouldn’t a baby?

It is not sexual, it is not disgusting.

It is a mother feeding her baby.

No, she doesn’t have to cover up and no, she doesn’t need to do it indoors.

Happy world breastfeeding week to everyone, let’s continue to normalise breastfeeding.