One piece of paper makes such a difference

Lonely

One of the things I have tried to highlight is how lonely the parenting journey can be when you have a child with “special needs”. I have been so grateful that I have had a couple of amazingly supportive friends who have been on similar journeys. It is a minefield and having friends who have had to walk some of the path before you is a real blessing.

Today we got a piece of paper that I never thought I would be happy to receive. We got the confirmation of our son’s Early Support panel hearing and that he is entitled to support. This will make a difference to his life and ours, both in what is available to him from professionals, but also when he starts school the support that the school will be providing. It also will help when we move. It shows that he’s already been assessed and is in the “system”. It means we don’t have to go through the lengthy referrals process for this part again.

I never thought I would be happy in having it confirmed that my child needs additional help from a young age, and that he has “significant and complex additional needs” but today I felt a degree of relief that my mummy instincts haven’t been wrong, and that my happy boy needed more support.

The next steps, when they are able to happen, will involve a lot more appointments, and time but it will be worth it.

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Frustrations and warmed by generosity

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I’m sure I’m not the only one for whom this image is a good depiction of when you are trying to just do a “normal” food shop at the moment. Not to stockpile or panic buy. Just to do a normal food shop.

For us, it hasn’t even been to do our main food shop – which is normally twice a month. This has just been as a result of trying to do a top-up shop and also to try and place my normal monthly online shop for delivery next week! As a result of stockpiling and panic buying, we have been struggling to purchase the bare essentials for our children to eat. What’s worse, is that these are mainly specialised foods – non-mainstream long-life milk, special flour, gluten-free bread. Free from chicken nuggets?! I know that there are others with allergies needing food, but we all shop normally and we always can buy what we need. For the shelves to be empty of these products it either means those with allergies are stockpiling, which from what I’ve seen in discussion groups is unlikely, or those without allergies are now buying the free-from products.

For us, this is not a case of we like to buy the more expensive, free-from options. These are the only foods we can buy without our young children getting really ill. And I know we are not the only ones who have been affected by this. There are friends around the country saying that they are struggling to buy the free-from products they or their children use.

But the flip side of this is we have seen a huge outpouring of love from friends and family as they try to help us source the food and milk we need. We have had deliveries just appear on our doorstep. Friends and family near and far stepping up to offer help. We are so grateful.

The other element we are having to face at the moment is a little boy who thrives on routine and his normality is having his “world” turned upside down. We all know these are for good reasons, but for children with various additional needs, these changes are causing huge problems. I know friends who are having to go into isolation with their children for 12 weeks as it’s for one of the family member’s best interests. I have several friends that this virus for them or a family member would likely be fatal. So we know these measures are necessary. However, for some of us, it is harder than others.

For us, this has meant we needed to set up a Lego play space for our little boy. As I have mentioned before, lego is the one activity that calms him and helps him focus. But with him sharing a bedroom with his 15-month-old sister, this is tricky. So for now, she will only go in their room for sleeping. We will keep her out of the room the rest of the time, as she is still frequently putting things in her mouth. This isn’t ideal, but we’re having to make things work.

I’m investigating online toddler group and activity sessions with songs etc so that we can watch to keep him engaging with others. Life is going to be a strict learning curve for sure.

I’m just asking that people moving forward stop and think about what they are doing, saying and sharing. Keep to the government facts. Stop and think, do you really need to keep an online shopping slot reserved every week for the next month? Do you have a neighbour that needs help? What can you do to make life easier for others?

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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.

Overtaking…

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Some days this parenting journey is tougher than others. Watching other children doing things you would expect your child to be doing is hard. But what I am finding harder at the moment is watching our 14 month old develop at a rate of knots, while seeing memory photos and videos of our 3 year old 2 years ago, and how there is a stark difference. Any health or development problems with a child are complex and challenging in their own ways. One isn’t worse or better than the other. And no parent deals with it better than the next. But each comes with its own challenges.

At times I feel I am grieving for my son for what he doesn’t have, but then I see how happy and content he is, and realise I need to keep focusing on the positives and celebrating him for who he is. He is the unique boy that he is. He brings us so much joy through his simple pleasures. His excitement that he can’t express when we understand what he is asking for. The celebration he makes of us when we get a shape in the right hole in the shape sorter! (Yes, we get clapped, and told ‘Well done you did it’!)

The hardest days are dealing with the frustrations that he can’t communicate. Often with his younger sister doing something he wanted to do but couldn’t, or her mastering something quicker than him. The tears and the tantrums can be explosive. They come totally from frustration from lack of ability to communicate, rather than bad behaviour.

Our frustrations end up coming from his lack of understanding of instructions, timings or consequences. Again most of the time not through bad behaviour, but from in inability to understand the concept of later, or afterwards.

All 3 of our children bring us total joy and complete frustration at different times – yes, even the 18 year old! But we know that it is a normal part of parenting. But parenting a child with developmental delays brings a different level of frustration at times because of what society expects them to be doing verses what they are capable of doing. I feel I have to justify why my 3 year old still has a dummy a nighttime. The simple answer is he is incapable currently of understanding that he doesn’t need one anymore. We can not prepare him like you can other children. I am constantly explaining that we are no where near toilet “training” as there is not currently the physical capability. Yes I know most children his age are getting there on the toilet training journey, but for him it’s not happening. But for all of this, it’s totally alright.

We might have the frustrations, the headaches of multiple appointments, the dramas of misunderstandings. But we also have the joy, the love, the cuddles, the laughter. The little boy who is so concerned every time his little sister is crying that he makes sure we know about it, even if we’re in the same room or even holding her!

Just remember when you see people and their children and it’s not what you would expect, the reason behind it is often far more complex.

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Small things that can do lots of damage

Yes I’m talking about words. What you speak can do so much damage. And the damage can last much longer than you ever realise. Knowing I’ve upset or hurt someone with my words intentionally or not plagues my mind for days. Similarly being hurt by the words of friends can take weeks or even months to go away. Or even if you think the hurt has gone, it doesn’t take much to resurrect it.

I know that there are times currently where I can be more sensitive to what people say, but I also know my closest friends are aware of this. But that hasn’t stopped people saying things without thinking. Little comments about how my children are dressed, or a mark on their faces or that I’ve not wiped their nose instantly could all upset me. It left me, and still can leave me, feeling judged.

But I’ve also witnessed how social media especially means words can be really damaging. I’ll never forget how it felt when I was single but desperately wanted not to be, and I had friend after friend posting they were “in a relationship with” or “engaged to”. And while I was happy for them, it could be hard to read.

Pregnancy announcements could be the same. Knowing how others could be hurting because of their own situations that you or I are not aware of made me be very cautious. And again while I will celebrate with friends in their joy, it doesn’t take away the pain. This pain, hurt, jealousy, etc isn’t new, but before social media it was easier to manage. You can only control to a point what you can see when you log in.

I do share on social media, but I choose who I share things with. Not everyone can see everything I post and that’s my choice. I choose who sees lots of images of my children. I choose who can see my blog post notifications. I choose what I post generally. And I carry the responsibility for those choices.

What is ok and what is not?

100 Quotes on Life that'll Bring Alive a New You & Change You Forever!!

One of the things I have found in the last few weeks and months is that my perceptions of what is ok and what isn’t are changing. Some of this is through psychotherapy, some of this is through experiences, some of this is through talking with friends.

I have seen things posted on line and shared in several places that are unhelpful and unhealthy. Images and quotes that have made me doubt myself, my opinions and my decisions. Things that have made me question those around me. There are 2 things I really need from those around me at the moment….consistency and loyalty.

When I say this, I don’t mean in a pompus, clique-y or sorority type way. But I mean in a way where I know who I can and can’t rely on. What is going to be stable in both mine and my families lives. What is going to be helping lay the foundations for who I am becoming.

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I’ve also seen things about who to rely on. And that online support is unhealthy, is unreal and is living in a fantasy world. For me, in reality, some of my friends that I know mainly in an online or digital capacity are some of my greatest support. Some of them I have met once, some of them I have met several times, and some of them I have never met, but they are their to support me, to encourage me and to help me achieve the best in who I am. They counsel me and help me process, in the same way that friends I see face to face do. In fact, some of those who are digital friends are the people I see frequently face to face. But that doesn’t mean that those who I have never met are worth any less.

With my depression and anxiety, friendships are hard to maintain. I know that they take a huge level of understanding from my friends and my support network. People need to know that I need to know who I can trust and when and where I can rely on them. If people let me down, then I will walk away as the energy that relationship takes from me needs to be invested in my family and other relationships.

What’s worse though, is that I know I am not the only person experiencing this. For many of my friends with a baby under 1, friends have become a rarity. People aren’t being bothered to take the time to invest in them now their priorities have changed.

New mums need the support the most. Whether it be a new mum for the first or the fifth time. Every new small person into a household mix takes their mum away from the “normality” that existed pre baby. But that doesn’t stop the mum from caring. It is then that she needs it more, but has it the least. So be a friend. Don’t stop caring cos one day you’ll try to care and it will be too late.

Depression Quotes and Sayings About Depression _ HealthyPlace

 

Realising what is causing damage

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One of the things that I have started to realise over the last few weeks, is that there are certain things that trigger emotions and reactions within me that I don’t expect. I have realised that some people live in their own bubbles and miss what is going on in other peoples’ lives. Sometimes this is intentional, and sometimes this is completely unintentional. And this really sucks.

It makes me put up barriers in relationships as I take personally things that were never intended to be personal. That were written without any thought of me. And that is ok. That’s how it should be. But I need to find a way to cope with this and to accept that these are not aimed at me.

This has also made me more aware of what I share and how it can be perceived by others. It’s about remembering not everyone has the perfect relationship, had the perfect childhood, has the best relationship with their parents. Not everyone gets their happy ever after. Some people have to kiss a lot of frogs. Some people are having to discover who they are. I am still having to discover who I am.

At the moment the only way I can cope with this is to put barriers up and shut myself away. Cut myself off while I re-evaluate where I am at, and give myself time to recover. And I know that this then confuses people. It isn’t easy to explain to anyone, it’s just how it is at the moment. I don’t always understand it myself. I just know when it happens that I cope the best way I can at the moment.

This week I have had to deal with a middle of the night panic attack for the first time ever. It was scary. I don’t know what caused it and I didn’t know how to manage it, but I managed to get myself back under control after a couple of hours. The only way I have been able to cope since is to stay where I feel safe – my home. I have seen a couple of people, but in my space. I know I will have to face the fear of going out again soon, but that battle is for another day. The anxieties running through my head some days are crazy! They are often irrational. They are almost always unfounded.

I can’t explain the ins and outs of PND for everyone, or say how each individual will be affected. All I can say is what affects me. For me anxiety and obsessive and controlling behaviour are 2 of my big “symptoms” of the post natal depression. I don’t understand why, and i really don’t understand the nuances of it at times – why the position of a knife in the kitchen drawer will drive me crazy, but i’m ok putting away a sock without a pair for example. It’s illogical, and I know it is illogical, but it is how my body is and I am having to learn to manage it.

Writing this blog helps me express where I am at. At times I struggle to vocalise it, even to my amazing husband. But I can write it down. My only hope is that my musings and downloading of how I’m feeling helps someone else out there.

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A fine line….

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I’m discovering how there is a really fine line between me feeling up and me feeling down. I often don’t know when I am close to teetering over the line. I am starting to recognise the triggers though. As I posted a few days ago, I have had a really positive few days. But I also knew that this didn’t mean I was permanently back on the up.

This afternoon I have felt myself sliding back down. Parenting three children (and yes my teenager is still my child) is a juggling act. As I have said before, all 3 have different needs and demands on my time. This week I have been having to manage a toddler who has had an allergic reaction to another food. As a result, he has been crabby, clingy and just not himself. Juggling that with a 6 month old who is trying to reach further, move more, do more, but constantly toppling, and also needing greater input and awake for longer, has been exhausting. The break in the madness was then going out for half an hour to pick up the teenager! But all of this, combined with an early start, and a full on, but highly enjoyable day before, has dragged me back down.

I am still having to learn where to draw a line and give myself a break. When I topple over the line, I find myself getting into bad, negative cycles. I start to compare myself, my life, my children with those of others. I compare with friends, with relatives, with strangers who post in random places on social media. I get myself down because I feel I am failing my child(ren) because they are not achieving their maximum potential.

I struggle because my baby isn’t keen on eating, when my friend’s child who is younger will chomp through 3 meals. I struggle because my toddler isn’t as eloquent as other children his age. I struggle because I can’t do with my children everything I feel I should. I struggle because I don’t want to leave the safety of my house. I want to stay in my safety blanket. I know I need to find space to stop and take a break when this happens, but it is finding the safest way to do that.

I know I made a mistake when I got to a similar point when my toddler was younger. I cut myself off from people completely, and nearly lost completely some very valuable friendships. This time I am trying to get the balance right. To be able to take a step back without cutting everything off. I’m still not always getting it right, but I am trying, and I am learning.

I hate the struggles that PND gives me. I hate the impact it has on my life at the flick of a switch. But I am learning that I there is a trigger, and I am trying to stop the switch being flicked.

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The fear of the scales

This contraption has been the cause of some of my biggest problems since giving birth. It has caused me panic attacks, it has caused tears, it makes a fear bubble up inside me every time I have to get her weighed.

I know that the fear stems from the first few weeks of her life, when every time she hadn’t gained weight they would be sending us back to hospital. But it has left a deep rooted fear that I will be judged and comments will be made if at any point she drops off her weight curve. Things like get bringing up more milk than normal after feeds because she’s full of mucous from a cold or she’s been gumming lots and creating acidic saliva make me worry. I dread the times when we have to put her on the scales.

As I’ve said before, my health visitor is amazingly supportive, and she’ll come to the house to do the weighing, rather than getting me to go to tbe clinic, where I’ve had meltdowns because I’m panicking. But I still have to get her and her brother weighed every time we see the dietician.

There is no easy fix at the moment, and like all my other anxieties it’s made worse by tbe post natal depression, but it doesn’t take the fear away. Like everything else, it’s another fear I have to overcome, and each of them is a baby step.

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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