When a conversation bring huge relief

Today I had one of those conversations that brought with it a huge sense of relief and gratitude for the healthcare professional that we have been referred to. It was with a physiotherapist. These are one of the few services that our son is now under, and one of the services that had to be delayed due to Covid-19. However today we were able to have a video consultation and a chat and actually start putting in place some plans that will slowly help making small steps forward.

One of the things I have struggled with both my sons is the amount I have had to do as a parent to get them the support they need for their various needs. With my younger son, especially, it has felt like I am banging my head against a brick wall at times to get the help he needs. 3 months ago we finally got the piece of paper that said ‘yes, he was entitled to support’ and that he had additional needs compared to other children of his age. But since then, it has been frustrating as all services and support went on hold. Today was a big step forward in the next stage of his journey.

Having this help mentally for me was a big thing. Being affirmed that we as parents are doing the right things, and being told that our little boy does need ongoing support with his mobility is comforting. Rather than feeling like we stick out because our 3 and a half year old still needs to use a buggy and can’t walk far, it’s actually been explained why, and we know we will be using one for a while to come. But also that is totally ok. Being told that we can be referred to Occupational Therapy for a chair to help him sit at a table properly, rather than having to work around with seats that don’t work brilliantly for his needs, and understanding why he still needs a highchair of sorts stopped the feelings of failing, and actually we reassuring.

The other big statement made in the call was “his little achievements are big achievements, and he will do them in his time and that is totally ok.” Which for us, as parents, has always been how we see it, but to have a healthcare professional state this, actually made a huge difference. They acknowledged how I was feeling and celebrated small things and will continue to celebrate the small steps. So yes we will talk about him learning to sit on a swing, we will celebrate the day he can sit upright totally unaided, we will celebrate the day he can walk all day without a pushchair or carrier. Because although these might seems out of sync for a child his age, for him they are huge huge leaps at the time that is right for him, and to get there will take a lot of effort and deserve a lot of praise!

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.

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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One small comment that makes you think ‘Ouch!’

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Today I experienced something as a parent that left me feeling uber protective, vulnerable, frustrated and like I was having to justify my son to a stranger.

It started with an innocent question, “what is the age gap between your two children?” but the reaction to my response of “two years” was one that really needed to have been ‘checked’. It was a look of total astonishment, followed by “really?” Yes, really. And this reaction wasn’t because she thought there should be a bigger gap. The reaction was because she thought, from observing the 2 children for an hour that morning, that it would be less.

Our amazing son has Developmental Delay. Currently we don’t know exactly what it is or what has caused it for sure, but we are trying to find out to get him the help and support he deserves through life. Don’t be sorry for us or him. This doesn’t stop him being a total delight. It doesn’t stop him being himself and having a wonderful personality and drive. In fact it makes him more determined.

We’ve not advertised it, because we don’t see it as an issue. We have told those who need to know and those who are close to us and form our immediate support network. But we’ve noticed it is becoming more obvious, especially when he is round his peers. And comments like today’s are starting to occur. So all we know is that he has definite developmental delays.

Do we know why? There is a strong possibility it is linked to the fact that my placenta failed at the end of my pregnancy with him. We know he was not getting all of the nutrients etc that he needed for at least the final 2 weeks he was in the womb. But we don’t know for sure.

The thing I would say, is next time someone says something like this to you, please don’t apologise to them, and try to hide your shock. Their child will still be their pride and joy and will celebrate smaller milestones in a much bigger way!

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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

 

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)

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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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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