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.

Looking after me so I can be there for them

One of the things that I have realised over the last few weeks is that as much as I focus on keeping my mind healthy i’ve not been keeping my body healthy. I’ve used far too many excuses to cover the quantity of chocolate I can consume in an hour. I’ve had days of eating in secret, binging when I feel out of control and then hating the weight creeping up and the waistbands getting tighter. I knew that the only time I would ever actually make an effort to stop the bad habits was when I was ready and I wanted to do it for the right reasons.

It’s like any life change, you can only make them when you are fully in the right head space and fully motivated for the right reasons. In the last year I have seen people I have known many years, and very close to me in age, lose their battles against horrid illness. This has spurred me on to make sure that the time I have with the family is the best possible, and also to be the best mum and wife that I can be. To be this I have to take care of my body. So I have started a journey. It will not be a short one, it needs to be a life changing permanent journey.

I know from past experience that it will be a journey where I will deviate at times. I know it will be a journey where I struggle to put one foot in from of the other on some days. I know on other days I will be running down the road calling everyone to come and join me. It is a life journey. But I also know for me that this is also a faith journey. It’s me trusting God that He will be with me in the lows and celebrating in the highs.

In the last few weeks there have been some big waves rocking the boat that is “life” and instead of looking to God and my faith, I went to chocolate, slovenly behaviour and blaming others. I have to remember that there is a bigger plan and a bigger person that knows and cares and loves me. He loves me no matter what, but I know that I hold a responsibility to. And that responsibility starts with loving myself in a healthy way. I will be the best of me and my Heavenly Father is in that with me.

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.

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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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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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.

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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