Comparisons hurt…. and they can do lasting damage

I chose to walk away from a group chat earlier today because people were comparing what their children could and couldn’t do. I find this really hard on so many levels. I feel like I’m having to justify why I feel like this.

In know society is full of comparisons and oneupmanship but that doesn’t mean I think we need to bring this on to our children. It is one thing saying you are concerned about your child’s development. It it’s another entirely when you feel you have to prove your child is as good as the next one or better. Each child will develop in their own time. Some will speak, some will walk. Some will write, some will perform. Some will love science, some will love music. Some will be all rounders. Some will have a very specific skill. Some will need help to get their development happening. Others will do it an looking time before their orders. All are perfect the way they are.

I’m also aware that maybe I’ve been blessed by my friend circles in the past or maybe just attitudes have changed more recently, but there seems to be less around celebrating the milestone, big or small, that your child has achieved, and more about have they done this thing by this date.

As a parent of two children with very different sets of additional needs I’m even more aware of the damage that comparing can also do to the mum. For a mum to hear than another child’s doing more and better than theirs it can be so painful and destructive to their confidence. The stress it can add to the parenting journey is huge.

As a parent, when your child is the one that’s not hitting the same achievements as other children the same age it is hard.  You start to doubt yourself, your parenting, your instincts. One thing I had to learn was that they do it when it’s right for them.

I was very blessed that the nct group’s I was part of with both of the pregnancies with my boys were incredibly supportive. Both groups celebrated the achievements if each child and joined one another in support rather than it being a big competition. In fact with my second son, they were all as keen as I was to set my son achieve the next weight gain! They cheered us both along.

Yes there are concerns that your child has “problems” and that that need help. But there are also people around to help identify that. And don’t be afraid to ask for help. You know your child. You know if they are happy. You know them and who they are. You are also the one that needs to champion them. You need to celebrate them and every little thing they achieve. Let them know that being them it’s very definitely enough. Being the best of themselves is all I ask of all my children.

I will always struggle hearing others comparing their children, because it highlights where I have a child who is different. I would much rather celebrate one child’s achievement, rather than the minute i hear “xxx can do this” i know that it will be followed by “well yyy can do this and this”. I’ve been told that it’s natural and i have up accept it will happen. Yes it will happen but that doesn’t mean i have to like it , agree with it, or participate in it.

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.

One piece of paper makes such a difference

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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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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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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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High functioning….in control??

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A friend shared this image this week and it really resonated with me, and I found it suddenly explained why people perceive me the way they do, and how come I come away feeling so exhausted at times!

One of my biggest realisations, as i’ve shared before, was that I am an introvert and not an extrovert, but I think this chart is close in helping me understand more about how and why I function like it do.

I will admit I am a huge over thinker. I am always thinking the worst or 5 steps ahead of where I am today. I am trying to stop this as much as I can. It really challenges my faith at times, and is the one place where I do just have to take a deep breath and pass it all over to God.

People pleasing is a big thing for me. I want to keep everyone else happy, even when I end up frustrating or compromising myself in the process. I am starting to say no to people and know that that is ok, but this is all interlinked with setting boundaries. Setting boundaries in some situations is easier than others. I have started to believe more in my self worth and know, especially in relationships, that I am worth more and that I shouldn’t accept being treated as anything less than my worth. I have realised that true friends and those that really matter treat you with the value you are worth.

People seeing me as outgoing and helpful have at times abused these traits to over burden me and to keep asking for themselves and taking from me, not seeing the bigger picture. But it also means there is a protective smoke screen I hide behind.

I really identify with the fear of failure. I hate letting people down. I hate doing a project that doesn’t work out. Even when giving birth to my eldest, my final incentive was to deliver him naturally, as anything else in my head at that point was failure. (I know in reality that it wouldn’t have been, and just having my baby here would have been enough, but that is where my head was at.) Even now fear of failure runs through how I work, and how I respond to things. It’s linked to people pleasing and wanting to keep everyone happy. But to colleagues I am seen as hard working and detailed, and helpful.

Don’t get me wrong, I do pay attention to detail and I do work hard and I want to be helpful, but when my anxiety is high, or one of my triggers is hit, I almost go into these traits in overdrive.

So is this list or chart a negative thing or a positive thing? I think for me it is positive, in that it is helping me to understand more and more about my anxiety and how it affects my life on a daily basis. My anxiety attacks are getting fewer, but there is always an underlying level of anxiety in day to day living.

But my anxiety currently isn’t always controlling me any more. I’m not always controlling it, but i’m more in control that I have been. I am high functioning within my anxiety, and I know many others with anxiety that are too, and that is also ok. But I am also trying to learn that showing the weakness is also ok.

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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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Commitment…as a wife, parent, friend, colleague

I’ve been thinking about commitment a lot over the last couple of weeks, as my eldest child turned 18. I made a commitment to him from the moment he was born that he would always come first. And I really hope that I’ve always kept that promise. That promise didn’t mean he always got what he wanted, or that he liked everything I said or did, but I meant that he was always a the forefront of my choices and plans.

And now that he’s turned 18, that commitment doesn’t end. And because he has 2 siblings that commitment doesn’t change. I have to change to adapt to putting my children and their individual needs first, and work out the compromises that need to be made. Within that, I also have my commitment to my husband. He is my best friend and my partner for life. He will be along side me long after all our children have flown the nest. My commitment to him is to keep investing in us through the tough times as well as the great times.

Anyone who truly knows me, will know that I give my 100% commitment to everything that I do. Be it friendship, work, hobbies, faith, life. That is a core part of who I am. As a result I don’t have a huge circle of friends, but those I have I give everything to. A lunch or coffee date will take priority as I give them my time. I know how much someone giving their time to me like that matters to me, so I value it when I give it to others too. Yes this can set me up for hurt, but it is a core part of me.

My commitment to my younger children means commitment to the menial tasks like making meals, sterilising bottles, providing them with a safe home environment, feeding them, clothing them. But it also means a commitment to being there forever. You can’t turn off being a parent just because they reach a certain milestone, but you can change how you relate and behave.

So take your commitments seriously. Especially to other people. You are probably unaware of how much others value it.

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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