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

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.

Sylvia-Inspirational-Quotes

Frustrations and warmed by generosity

download

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?

Special-Needs-Lego-Therapy

A start of a long journey

8411547c00870351ac737aca480b347d

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!

7267b4078f9135ad3f75d8ae0cf70b6b

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…

601e1cd6d2191cc7aa1beb394b55a6c4

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.

5de75fe753b48ef2f6de9d16d66a9c97

High functioning….in control??

82950506_610545682854047_7390164872618573824_o

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.

d45cfacee7281ac8b1c0fa31a2554f9e

One small comment that makes you think ‘Ouch!’

all-children-accomplish-milestones-in-their-own-way-in-their-own-time-quote-1

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!

bacdf8444ccf26e9e8f66869ea0212f4

 

12 months gone in a flash

cute-mommy-and-son-quotes

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

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

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

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

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

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

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

Family-Memory-Sayings-025