If only it was that simple to stop your mind comparing…

One of the things you always hear as a parent, and something I try my hardest to follow, is ‘Don’t compare your child to others.’ And when you have a child with additional needs, this is even more important. Their milestones are their milestones, and they reach them when they get there. But that doesn’t stop human nature.

You will always get the comments comparing siblings or friends’. You will get the well meaning person who says “they’re not that far behind” or the other person who says “well they are special”. But you also always have the little voice in your head, that triggers emotions when you see children of the same age doing tasks that you know you child is not capable of and won’t be for a long time.

The last 8 weeks that have been “lockdown” have highlighted some of those differences, and it really can be so hard. No my son isn’t creating crafts or exploring the world more. He’s struggling to understand why there it’s nothing different in his days, why he can’t see the people he wants to like normal, why he can’t visit the zoo, play in the playground. He doesn’t understand the concept of people being sick or the chance or being sick.

One of the recent things that have got me as a mum is the “chocolate challenge”. (For anyone who hasn’t seen it, you leave a child with a bowl of chocolate or sweets and tell them not to eat them till you’re back, and leave your phone filming them to see what they do. ) I see children the same age happily understanding what is asked of them and choosing not to eat the sweets. But I know that there is no way my son would understand the instructions enough to follow them. He still has very minimal concept of time and delays in time. He will use the word tomorrow, but then expects it five minute later. Life is still very much in the immediate.

It feels strange to be celebrating my son at 3 and a half finally trying to sing a nursery rhyme. My eighteen month old is almost at the same stage. Where there should be a two year gap, much of the time it feels a lot lot less. But then I stop and remember that other parents would be happy if their child was even halfway to this point. And then I tell myself to stop comparing. But it’s never that simple. You do keep comparing even though you try not to, because society pushes us that way.

This is a journey. Parenting is a journey, but boy it’s out tough at times.

Meltdowns are the norm

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Meltdown is not a term I use lightly when it comes to describing my son’s behaviour at times. It used to be a term I would throw around until I experienced an hour and a half full-on meltdown where nothing could console my boy. His meltdowns generally come from a place of not understanding or being understood. He goes beyond frustration to a point where he can not regain control and we can’t “snap him out of it.”

The thing we have had to learn is that they are generally not coming from misbehaviour or stubbornness. They are when he hits a place of being unable to process.

But we are also having to decipher what is normal “threenager” behaviour, and what isn’t.

A 45-minute meltdown due to tiredness is not uncommon. But then a tantrum from a tired three-year-old is also not uncommon. I guess the less common part is the inability to distract them or help them regain control. A lot of the time it is about finding the right “thing” that works for them. We have discovered that Lego seems to be the great “thing.” It is the one activity that he will concentrate on for literally hours. Not the big duplo blocks – those are baby’s he says. But proper lego. It calms him in a way nothing else can.

Luckily we have a huge supply of the tiny, foot hurting, bricks from his older brother. However, currently, we are limited by the space we have available for where it is safe to be played with. Our daughter is still into putting things in her mouth, and our spare living room is full of boxes. When we move soon, one of the things we are doing is separating them into their own rooms. As well as enabling them to have their own sleep routines, this also means that our son can have the lego out and in a space that is his to retreat into.

The other hard thing that comes with his meltdowns is the physical lashing out. In one meltdown I can be pushed away, kicked, hit, screamed at. Toys or other objects can be launched out of an inability to control. It’s exhausting for him and for us.

But sadly there are limits to what we can do. Telling him off when he’s out of control doesn’t help. Getting angry at him or punishing him doesn’t help. All we can do is stop, make him safe, and try to understand the trigger to reduce the risk of it happening again.

We’re learning about his behaviours constantly. We’re understanding a little more some days, and others feeling like we are back to square one. And we know this is going to continue for potentially a long while.

As a parent, I know we like to use phrases like “my child is having a meltdown.” But I would ask of you, are you overusing a phrase that for another child it is key to differentiate between tantrum and meltdown? I’m not trying to belittle what you experience with your child. Tantrums really are hard enough. But can you stop and think about whether your terminology is fair and accurate?

Some days I just want to give up on this parenting thing. I am exhausted from having two children that function at an almost similar point developmentally. I don’t have the answers to people’s questions about what the future holds. But then I get the cuddle or the smile or the “thank you” that melts my heart and makes each struggle so worthwhile.

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A start of a long journey

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Today was an interesting day. It was a day where we started to get some answers, but at the same time threw up a million more questions. It’s also been a day that has, for me, thrown up lots of different emotions, which I am still processing.

So today it was confirmed that our fabulous 3 year old boy has significant developmental delays. And keeping in with the honesty of my blogging about parenting over the last three years, I am going to keep sharing in here as we navigate the next few days, weeks, months and now we know years. For me one of the key things that people should take away from this is that our son is our beautiful, loving, caring son who brings us  so much joy. Also these posts won’t be for sympathy or pity but they are my way of processing, plus hopefully something I write might help and inspire other parents on a similar journey.

So where are we at…..

Today the tests showed that our son is 12-18 months delayed in most areas of his development, although one area he is 24 months delayed. This means we have a very frustrated little boy at times, who wants to be able to do the same as his friends, but finds it hard or at times impossible. Today also was a reality check in that there is no quick fix. There are various therapies that can support different parts of his development, but this isn’t going to be a case of a bit of treatment and he will be achieving the goals for a child of 3 years and 2 months. Some therapies will have a bigger impact than others. Some things that are tried may not make any difference.

Do we know the cause?

In a quick answer….No. But there are some suspicions or theories that need to be investigated and will be looked into over the coming months. We do know that my placenta failed before he was born and that the impact of this would not be known until he started (or failed) to reach milestones. But nothing can be confirmed or eliminated as a cause. It might be one of those permanently unanswered questions in life!

Whats next?

Appointments, appointments and more appointments! Juggling work, life, parenting and appointments is going to be my new challenge. But it will all work out. Making sure our daughter gets the time she needs too will also be key. We will just have to switch priorities if needed.

If you’ve got this far, then thank you. If you’ve got questions, ask, and we’ll answer if we can. And just keep being normal with us! He is our amazing boy and we will help him be the best he can be at being him!

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Asking for help is totally ok!

Yesterday evening I read the sad news that Caroline Flack, a 40 year old TV presenter has taken her own life. While she made mistakes in life, the press and society seemed to make more out of her troubles than try to help her. And how many of us read the stories or saw the pictures of her falling around drunk?

But more than this…. why as society do we make it so hard for people to ask for help? She should have had everything to live for, but she also obviously felt like it wasn’t enough. It’s so hard to hold your hands up and say you struggle. I know that from personal experience. No, today I’m not suicidal, but 24 years ago I was. I was at that lowest point. And I didn’t know that I could ask for help. Society didn’t talk about mental health. In fact I was made to feel ashamed about taking an overdose. I was made to feel like I was the problem. It took another 20 years to be cold enough to start talking about my battles with anxiety and depression.

Being there at the lowest point, feeling like you have no other option, is a dark lonely isolated place. Unless you’ve been there it is hard to understand. People look at the life you project outwardly, and assume that that is the whole picture. They love the rose tinted perspective they see. Today it’s like the social media portrayal that people put out. Only show the best and the positive or the humorous bits.

But life isn’t like that in reality. Really isn’t black and white. It’s blue, green, pink, grey, yellow and many more colours. And while for you, yellow might be positive, for the person next to you it might be negative. Rather than assuming that they see what you see, take the time to stop and to smile and to ask how they are and what they see! Those words our actions might be the thing that changes their day from a negative to a positive!

And if today you’re the person who is feeling that the world is black, hard and pointless, then please also remember you are not alone and there are people to help. Life is a hard road to travel, but there are some amazing highlights even on the darkest days.

12 months gone in a flash

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12 months ago I entered hospital knowing within the next few days I was going to become a mummy again for the last time. I knew I was going to meet my little girl. But I also knew I could be looking at another long induction, I knew there were risks, I knew so much, but I also knew nothing. I knew nothing of this little girl that had been growing inside me for 38 weeks. I had struggled to bond with her during pregnancy as i’d felt minimal movement all the way through. I had hated the pregnancy. I wanted that part to be over. But I was also excited. I was excited to meet this little person.

In the end, she decided that she was going to make a quick arrival into the world. So quick the midwife didn’t have time to make any notes or observations! My daughter’s birth set the pace of the last 12 months.

Nicknamed “small but mighty” she fought every battle she came up against in those early weeks and months, and let the world know she was a fighter. She has ruled the roost at home and made it very clear who is the boss to her brothers!

The year has been one full of bittersweet moments for me. I have adored every moment as she has grown and developed from a tiny tiny baby, to a dinky toddler (and I can call her that as she’s now walking!) But i’ve also had this sadness knowing that I won’t have another baby going through these milestones again. I’ve been battling with this, as it seems so selfish. I know there are so many out there who would love just one child of their own, and I have 3. But I also know I had a desire to have 3. I know how much I love being a mum and how at times I feel I miss out on things because I am a working mum.

This year I have carried guilt at feeling like I’m wishing days away while I was looking forward to returning to work. Then feeling guilty for being at work. I’ve had days when I just want those moments to keep going and never stop. I’ve tried to capture them in words, pictures and in my heart. The time seems  like it has slipped past without me noticing.

In these 12 months I’ve also become the parent of an adult! And now when I look back I feel that there are many moments of my son’s life I have missed. I feel like there are memories I am already forgetting. It’s reminded me how time with my children is so precious whatever stage they are at. I want to value and hold each second and cherish it. But I also want all my children to reach their potential at every stage of their lives and fly high in whatever way that is.

Parenting 3 is something I resolutely vowed I would never do, but actually I think it’s working ok. I’m not always getting it right, and I am always feeling mum guilt over one or other of my children. People ask is 3 easier than 2, harder than 2? Honestly…..3 is different to 2. Some days it is easier, some days it is harder. But every day is a memory I hold on to.

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Allergies take 3! (and more!!)

Check out KFA's _22 Things We With You Could Understand About Food Allergies__

People asked when I was pregnant, what was the chance of the baby having the same allergies as my toddler. It really was 50/50. 2 weeks in, and we already had the first bit of the answer….3 out of 3 children had CMPA. A dairy allergy. In a space of 6 hours I watched my contented baby turn into a miserable, writhing in pain little girl, producing nappies that were not “normal”.

I was so grateful that I had a supportive Health Visitor, who straight away put  my daughter on to the NHS allergy pathway, with a referral to the dietitian, and we made an instant appointment with the GP.

But one thing we didn’t know was how severe her allergy to cows milk protein was, or whether it would be her only allergy. What we did know was that this meant that weaning was going to have to be the allergy led method again. Following on from dietitian advice, we started with our son’s known “safe” foods, trying to build up a base of foods, before testing some of his allergens.

I’ll never forget the day I went for the first of his known allergens. I was nervous. Knowing that this could cause my daughter pain or worse, was not a great feeling. But I had to do it. We were lucky. The first one we tried was apple, and all was ok! Phew! And we tried that because it is added to so much that it was a bonus if she could have it. Maybe I then thought it wouldn’t be so bad or my mind just thought lets go for it, but I then tried another allergen. This time it was one where my son was allergic to  a whole food “family”. The first time seemed ok, so we went on for attempt 2. That night, we did not get much sleep. She was so unhappy. In pain, drawing her legs up, crying, unsettled. We thought it was the sweet potato, but to be sure, we had to try again a week or so later. And yes, it happened again. One little girl, very unhappy. And so her allergen list started.

What we have found is that when she has gut based reactions, they are generally more severe than her brother’s. For example, she can’t tolerate even medical grade coconut products, but her brother can. She can’t tolerate any fish we have tried, her brother can tolerate white fish but not oily fish. She can’t even cope with peppercorns or ground pepper from the nightshade family, he can cope with a little.

But we’ve also got a little girl that doesn’t like to have lumps in her food. After 3 months of introducing food, she will finally have a bit of texture, but this has been an additional challenge. The dietitian recommended focusing on textures over new foods, as this was more important, so the introduction of new foods has gone on hold. We’ve got many more things to try.

So it’s actually been trickier this time round. We don’t have all the answers for our daughter yet and we don’t know if it will be worse than our son or better. But we know it’s currently a very similar path. If we go away, even for 1 night, we take 2 bottles of antihistamines, 2 inhalers, snacks and milk for both children, probiotics to help their guts. The list goes on. Currently there is no epi pen in the kit, but that doesn’t mean their won’t ever be. I’m just grateful that neither has had a reaction that needs one.

So, life as an allergy mum continues. And the one thing I am grateful for is the fact that if nothing else I can be a support to others who are journey some of a similar path.

Check out KFA's _22 Things We With You Could Understand About Food Allergies__ (1)

Getting ready for the next stage

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One of the things I am really struggling with at the moment is every time someone tells me that my little girl is growing up. I know that she will be my last baby, and so in someways I want to make all of this time last as long as possible.

In 2 days time she will be 7 months old. That is more than half of her first year gone, and I feel at times like I have missed so much of the first few months. I am constantly trying to capture in my mind and my heart each moment, as I know I can never have them again. While I am celebrating her moving on in her development, part of me keeps feeling ‘Not yet’! Part of me isn’t ready yet for her to start being mobile, becoming more independent, needing me less.

And I know that some of this is a long long way off.

My toddler still needs me daily. My teenager needs me – but not as much as it feels like I need him. And my daughter needs me. I know she does. But I also know that she doesn’t always miss me like I miss her. I know that none of my children do.

My husband and I joke about my behaviour when I am apart from my teenage son for any period of time. I feel like I have lost an arm or a leg. I find it really hard. I struggle with letting go, as I can still remember holding him in my arms nearly 18 years ago, and  realising that this small person was suddenly totally dependent on me.

I struggle with how willingly my toddler runs off to his childminder – and only because she is so amazing at what she does, and he absolutely adores going. But I struggle because it is a time in his week when I am not needed.

At the moment I am struggling with the idea of returning to work. I love my job. I have really enjoyed my Keeping In Touch days. I adored the day I had back in the office a couple of weeks ago. I love my colleagues. I love what we do. But I am struggling with the idea of not being there for my daughter all day every day. It’s irrational, I know. I know she will be having an amazing time with our wonderful friend and childminder. I know I can touch base whenever I need to. But I am struggling.

What I have realised is that I am human, I am normal. I am not superwoman. I am allowed to feel like this. Loving my children is the hardest but the easiest thing to do, and each stage require me to let go a little bit more.

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The end of a journey

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Over the last couple of weeks, my husband and I had agreed that we would  start to wean our daughter off of breastfeeding and on to formula. It came with a real mix of feelings for me. Sadness in someways as I have enjoyed the closeness and knowledge that I was her main provider, but on the other side there was a huge feeling of relief. It was so hard to actually make a decision, because society has so many feelings about what you should or shouldn’t do.

For us there was the added complexity of her milk allergy, exacerbated by her starting to react to her dairy free formula. So another GP appointment, and another formula, and we could start the process again. But for 5 days I was doing every feed, and what I realised very quickly was that I was exhausted and struggling. I missed being able to do bedtime with our son, because I was having to feed our daughter, rather than my husband giving her a bottle. I was struggling in the morning, as a time where I had normally caught up on sleep, while my husband did the first feed and took both children disappeared.

And then on top I had the mum guilt. I felt guilty cos I was resenting having to feed her all the time. I felt guilty because I couldn’t do things with my son because I was feeding, and when I wasn’t feeding I was too tired to do much. I felt guilty as a wife, because I was so worn out by it all. It was a huge battle I was having internally.

Making the decision to swap to solely formula feeding, was, in the end, and easy one. I knew I couldn’t keep going feeling so tired out by it all. I needed to be able to share the load. I need to be able to say yes to an invite from a friend if I want to go out. I need to find time and space to be me, Rachel, rather than spend my whole time being “mum” or “mummy”.

I have to say, I couldn’t have done the feeding journey I have been on without the never ending support of my online mummy friends. The two dozen or so women who have supported me through the middle of the night endless feeds courtesy of WhatsApp. The ladies on our facebook group that have encouraged me when I was having the bad days. And today, when I shared that I was at the end of the journey, they just loved and supported me some more.

For me, to reach 22 weeks of breastfeeding, is a milestone I never thought I would achieve. In the early days I was under so much pressure from medical professionals to switch to solely formula feeding, and then since then there has been pressure from some friends and family to stop breastfeeding as they think it was invading in to life too much and not what they saw as “normal” as it wasn’t what they had done, to pressure from people to go to solely breastfeeding as “breast is best”. I’ve always known that I was going to have to increase bottle feeds as I couldn’t express the milk needed to do a day or a night without me there, and with returning to work, and settling in with the childminder, it was something I was anticipating.

For me, fed has always been the best option. My eldest was bottle fed from 10 days old. My second was given his first feed by cup, he had 12 hours of tube feeding, 8 weeks of breastfeeding, and then switched to formula. So all very different journeys. Ending the breastfeeding journey now is what is right and best for me, my daughter, my sons and my husband. Because, more than anything else it is what is right for my mental health right not. My journey is not going to be right for everyone, and I know people will have their opinions, but I am going to try not to care. I know my family are going to be happier and that is my priority.

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Zzzzzzzzz…. what is sleep?

This image makes me smile, as it’s one of the big tips you get given when pregnant, ‘Sleep when the baby sleeps’. Ok, so that might work when you only have 1 baby, and that is still banking on the baby having good naps in the day, and you being at home and vaguely in a head space for sleep. But this doesn’t work when you have a toddler.

Yes my toddler still naps, but invariably not at the same time as the baby. It is also currently the only space where I can eat my lunch in peace, without my food being stolen. It’s also the hour or so in the day where I’m able to watch adult TV! And by that I mean indulging in my trashy tv love of old soap reruns! There really is a limit to how many times I can watch Paw Patrol in a day!

So daytime sleeping with 2 is a rarity! But recently for us, night time sleeping has also been a bit of a rarity. The baby had been waking every 2 hours for feeds, which when a feed can take 20 mins meant I was only getting sleep in 90 minute blocks. But then the toddler decided to embrace the sleep regression that can come at 2! He decided that for about 2 months, the day started between 4 and 5am! He was also waking at least once in the night. And generally it had to involve mummy cuddles no matter how many times daddy would go.

I am very blessed to have a husband that will get up early with the toddler, and take the baby if she’s not feeding, so I can get a couple of extra hours sleep. (We’ve also learnt the hard way that for me this can be quite essential, as I stuffer from migraines, and not getting enough sleep is a huge trigger.)

You’ll notice that I’ve been writing this in the past tense, and that’s because we’re starting to see a change…. the toddler has gone back to sleeping through the night and also not waking till 6am! And in the last week, the baby has done a huge shift and is only waking once! I’m not counting my chickens, and I know it can all change again at the drop of a hat, but for now I’m making the most of a bit more sleep.

Sorry to friends who are about to start this journey with a second, if I’ve shattered any dreams! And I’d love to me the person who first coined the phrase “Sleeping like a baby”! I would love to meet the baby they were referring to!

Please don’t think you know the answers….or have a strop cos you don’t get a cuddle!

Parenting for anyone is a journey.  It has highs and lows. Every day is another point of learning, of frustration, of joy, of laughter, of tears. For me, the last few weeks have been more of the lows and the tears than many would expect. My parenting journey has been an emotional challenge, that I was hoping it wouldn’t be. In the last 8 weeks I have struggled as having my daughter has not been the perfect time that I had dreamed it would be.

I know that at times of upheaval and change I have an even greater desire to be in control and for things to happen in the way I had expected. I also know that when it doesn’t I struggle with myself, my feelings of disappointment, and my urge to have everything in control. I also get more anxious as i feel life spiraling out of my control. I end up hitting rock bottom. I can get very depressed, and I find each day a challenge.

At the moment, most days are a challenge. Getting myself and my children dressed in the mornings often feels like a great achievement. To get out of the house, is an even greater task, both in terms of emotional preparation and in terms of physically getting there.

But in all these challenges I can keep hold of my children – with my baby this is often currently a very physical thing. I need to hold her for reassurance, but also so I know that I am not missing her cues for need of provision fro me – be it food, communication, space to sleep. I know people think they are helping me by offering to hold her, to take away the “burden” of having to do it all, but at the moment, I need to. When I feel safe and secure I will ask for help. I will ask for someone I trust to hold her, but I won’t just pass her around for cuddles.

With my toddler, it’s being able to give the cuddles, make the dinner, provide the stimulation required, sit on the floor and do the jigsaws. I need to know I am still meeting his needs. I also need days where all we do is chill together watching movies. I need to know I’m getting things right.

With my teenager, I need to know that I can still be there for him. I need to know I can drive him to college occasionally.  I need to be able to check in and chat over the day. I also need to be able to sit back and let him be the near adult that he is. I need to enable him.

And in amongst it all I need to be a wife that can support her husband. I need to be able to do bits around the house so that we can still function.

I know people will say to stop, let go of the feeling of have to, share some of it. But the reality at the moment is that at the moment I can’t. I haven’t got there yet. So sometimes I need space and that is where I am at. I am getting support from the right people, and I know I’ll get there in the end. I’m not always getting it right for the world, but right now it’s right for me.

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