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.

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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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 usĀ  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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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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12 months gone in a flash

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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 seemsĀ  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.

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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.

End of another phase

This week marks another key point in my parenting journey. My maternity leave is coming to an end. I’m really not sure how i feel about it. Mixed emotions i think.

I adore my job. I’ve said this many times,and I’ll keep saying it. I love my job, the charity I work for, the work we do. It’s also what makes a huge difference to my mental health. But on the flip side,this means my daughter is growing older. She’s going to be going to a child minder. She’s now closer to a year than to birth. She’s been growing in the big wide world for almost as long as she was growing inside me.

I have loved my 9 months of being mummy and mum. I’ve loved watching my children grow. Watching my teenager flourish in his first year at college. Watching my toddler gain more independence. Watching my baby grow and learn.

Knowing i will not do this parenting journey again has made me even more aware of every milestone. Each new thing. Each change in appearance. Each ounce of weight gained. Every smile, every tear. I hate the thought of missing anything,but also know i need to step out of this safe bubble.

But this realisation has also been a bit overwhelming. It hit me hard, especially as it coincides with returning from a fabulous holiday this week, and a big change in weather. I’m trying to make sure I stop and refocus,but in reality at times that’s hard. So for now I’m focusing on things I can manage and control. Deep breaths and move a step forward.