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.

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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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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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 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.

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Getting ready for the next stage

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One of the things I am really struggling with at the moment is every time someone tells me that my little girl is growing up. I know that she will be my last baby, and so in someways I want to make all of this time last as long as possible.

In 2 days time she will be 7 months old. That is more than half of her first year gone, and I feel at times like I have missed so much of the first few months. I am constantly trying to capture in my mind and my heart each moment, as I know I can never have them again. While I am celebrating her moving on in her development, part of me keeps feeling ‘Not yet’! Part of me isn’t ready yet for her to start being mobile, becoming more independent, needing me less.

And I know that some of this is a long long way off.

My toddler still needs me daily. My teenager needs me – but not as much as it feels like I need him. And my daughter needs me. I know she does. But I also know that she doesn’t always miss me like I miss her. I know that none of my children do.

My husband and I joke about my behaviour when I am apart from my teenage son for any period of time. I feel like I have lost an arm or a leg. I find it really hard. I struggle with letting go, as I can still remember holding him in my arms nearly 18 years ago, and  realising that this small person was suddenly totally dependent on me.

I struggle with how willingly my toddler runs off to his childminder – and only because she is so amazing at what she does, and he absolutely adores going. But I struggle because it is a time in his week when I am not needed.

At the moment I am struggling with the idea of returning to work. I love my job. I have really enjoyed my Keeping In Touch days. I adored the day I had back in the office a couple of weeks ago. I love my colleagues. I love what we do. But I am struggling with the idea of not being there for my daughter all day every day. It’s irrational, I know. I know she will be having an amazing time with our wonderful friend and childminder. I know I can touch base whenever I need to. But I am struggling.

What I have realised is that I am human, I am normal. I am not superwoman. I am allowed to feel like this. Loving my children is the hardest but the easiest thing to do, and each stage require me to let go a little bit more.

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A fine line….

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I’m discovering how there is a really fine line between me feeling up and me feeling down. I often don’t know when I am close to teetering over the line. I am starting to recognise the triggers though. As I posted a few days ago, I have had a really positive few days. But I also knew that this didn’t mean I was permanently back on the up.

This afternoon I have felt myself sliding back down. Parenting three children (and yes my teenager is still my child) is a juggling act. As I have said before, all 3 have different needs and demands on my time. This week I have been having to manage a toddler who has had an allergic reaction to another food. As a result, he has been crabby, clingy and just not himself. Juggling that with a 6 month old who is trying to reach further, move more, do more, but constantly toppling, and also needing greater input and awake for longer, has been exhausting. The break in the madness was then going out for half an hour to pick up the teenager! But all of this, combined with an early start, and a full on, but highly enjoyable day before, has dragged me back down.

I am still having to learn where to draw a line and give myself a break. When I topple over the line, I find myself getting into bad, negative cycles. I start to compare myself, my life, my children with those of others. I compare with friends, with relatives, with strangers who post in random places on social media. I get myself down because I feel I am failing my child(ren) because they are not achieving their maximum potential.

I struggle because my baby isn’t keen on eating, when my friend’s child who is younger will chomp through 3 meals. I struggle because my toddler isn’t as eloquent as other children his age. I struggle because I can’t do with my children everything I feel I should. I struggle because I don’t want to leave the safety of my house. I want to stay in my safety blanket. I know I need to find space to stop and take a break when this happens, but it is finding the safest way to do that.

I know I made a mistake when I got to a similar point when my toddler was younger. I cut myself off from people completely, and nearly lost completely some very valuable friendships. This time I am trying to get the balance right. To be able to take a step back without cutting everything off. I’m still not always getting it right, but I am trying, and I am learning.

I hate the struggles that PND gives me. I hate the impact it has on my life at the flick of a switch. But I am learning that I there is a trigger, and I am trying to stop the switch being flicked.

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The fear of the scales

This contraption has been the cause of some of my biggest problems since giving birth. It has caused me panic attacks, it has caused tears, it makes a fear bubble up inside me every time I have to get her weighed.

I know that the fear stems from the first few weeks of her life, when every time she hadn’t gained weight they would be sending us back to hospital. But it has left a deep rooted fear that I will be judged and comments will be made if at any point she drops off her weight curve. Things like get bringing up more milk than normal after feeds because she’s full of mucous from a cold or she’s been gumming lots and creating acidic saliva make me worry. I dread the times when we have to put her on the scales.

As I’ve said before, my health visitor is amazingly supportive, and she’ll come to the house to do the weighing, rather than getting me to go to tbe clinic, where I’ve had meltdowns because I’m panicking. But I still have to get her and her brother weighed every time we see the dietician.

There is no easy fix at the moment, and like all my other anxieties it’s made worse by tbe post natal depression, but it doesn’t take the fear away. Like everything else, it’s another fear I have to overcome, and each of them is a baby step.