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 small comment that makes you think ‘Ouch!’

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Today I experienced something as a parent that left me feeling uber protective, vulnerable, frustrated and like I was having to justify my son to a stranger.

It started with an innocent question, “what is the age gap between your two children?” but the reaction to my response of “two years” was one that really needed to have been ‘checked’. It was a look of total astonishment, followed by “really?” Yes, really. And this reaction wasn’t because she thought there should be a bigger gap. The reaction was because she thought, from observing the 2 children for an hour that morning, that it would be less.

Our amazing son has Developmental Delay. Currently we don’t know exactly what it is or what has caused it for sure, but we are trying to find out to get him the help and support he deserves through life. Don’t be sorry for us or him. This doesn’t stop him being a total delight. It doesn’t stop him being himself and having a wonderful personality and drive. In fact it makes him more determined.

We’ve not advertised it, because we don’t see it as an issue. We have told those who need to know and those who are close to us and form our immediate support network. But we’ve noticed it is becoming more obvious, especially when he is round his peers. And comments like today’s are starting to occur. So all we know is that he has definite developmental delays.

Do we know why? There is a strong possibility it is linked to the fact that my placenta failed at the end of my pregnancy with him. We know he was not getting all of the nutrients etc that he needed for at least the final 2 weeks he was in the womb. But we don’t know for sure.

The thing I would say, is next time someone says something like this to you, please don’t apologise to them, and try to hide your shock. Their child will still be their pride and joy and will celebrate smaller milestones in a much bigger way!

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Commitment…as a wife, parent, friend, colleague

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

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

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

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

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

A summer of firsts and lasts

The last 3 months has certainly been a busy season in our lives. It’s been a time of lots of firsts and lots of lasts!

As a parent it was my first time of feeling totally helpless during the long wait from exams to results day. There was nothing I could do to impact or change the results. I just had to wait.

I witnessed my son complete his last day at secondary school. It was a day of pride, when he was recognised for what he had done outside of lessons to help others through sport; a day of closing a door on a huge chapter of parenting my eldest as he moved on to his next journey. It was also the start of a process of letting go as a parent.

We then moved into a period of the toddler really changing in his development…. walking finally arrived, as did running, tripping, and a huge determination to do it for himself. New words are spilling out daily, which come with frustrations for us all. We hit one of those “leaps” which resulted in a lack of sleep. Oh and then we all had to deal with a heatwave!

Holidaying with a toddler and a teen was a new challenge. The teen missed lie ins, because the toddler didn’t do them, and noise travels freely in a tent. But they also spent special tunes together as brother’s – especially on the water slide in the pool and the rides as the local theme park! I loved watching them bond and enjoy the time together. It’s amazing to watch.

We then did the first of results day. I discovered that I was more emotional about the results than my son! But that actually we were both in a state of tension. We also did some good talking that day and week and I felt things shift to the next level, where he takes even more responsibility.

Whatever age your child, it’s hard to let go as they take the next steps. Letting go of my toddlers hands physically so that he can walk on his own, or metaphorically letting go on my teenagers hands as he walked into college on his own to enrol. The worrying doesn’t go. It just changes. With one I worry he’s going to fall or step off something not realising there is a drop, with the other I worry about bigger life choices.

It’s been a summer of change, but good change and essential change. This is a period of change for us all as a family, but the one thing I know is that none of us are doing any of it alone.

I hate GCSEs just as much as a parent!

This image really sums up how the GCSEs my eldest is sitting this summer seem. I hated GCSEs the first time around when I had to sit them. It definitely wasn’t a time I look back on with happy memories. And now, as a parent of a teenager going through them, I hate them again.

It seems so unfair that my son’s year are having to be the guinea pigs for the new exams and syllabus for so many subjects. I know a year has to be, but for so many at once?!

I hate the pressure that is put on schools by different groups. Not just Government, but the academy group they are part of, the governing body, parents, the list goes on. I hate that this pressure is passed down on to all students. And I hate that they insist that all students have to learn and revise in the same way, even if it really doesn’t suit them, or they have additional needs that require a different way of working.

I also get frustrated that by standing up for my son and his needs, I’m labelled as a fussy and protective parent. But without too many emails, 3 meeting, 5 or 6 phone calls, he would never have got the support he is entitled to.

So I guess this is my rant about the frustrations on the older end of parenting. It’s hard work. It’s frustrating as a parent. It’s frustrating for the teenager. It’s a time of change and decision making that can affect life goals. I’m glad I’m not there again as a teen, and I hope I get it right as a parent. Roll on 2 months time!

Small steps

Life is made up of small pleasures. Happiness is made up of those tiny successes. The big ones come too infrequently. And if you don’t collect all these tiny successes, the big ones don’t really mean anything.

This is so true in where I am at in my parenting journey at the moment. With both of my boys.
With my eldest we are celebrating the small successes being made as we approach GCSEs, and ticking off little milestones as we work towards the big milestone. I say we, because this really is a family effort. He might do the studying and the writing of the exams, but we are doing this together. Our plans are structured to support him and encourage him through each stage.
At the end of this stage we will be moving on to the next big stage. Some big steps have happened…..college interview, course place offer….and acceptance, mock exams done, big coursework assessments done. All steps that need to be completed, and all that need to be embraced and celebrated in different ways.
With my youngest we’ve been celebrating some of the small successes that are helping him to achieve the normal milestones, that all parents celebrate. After finally getting a physio assessment, we’ve got shoes. Earlier than normally recommended, and against everything I’d been told, but essential in the first steps to help sort his feet and legs. Currently his feet – mainly one but the other is also a problem – turn inwards and under. This has affected his ability to walk. His mind was very definitely willing, but his body didn’t follow.
In the 5 days since having his new boots, his confidence in balance, standing, and walking with a walker or furniture or our fingers has leaped ahead. The look of determination on his face as he takes each step is amazing to see. The smiles and laughs as he reaches his destination quicker each time are fabulous to capture. I want to shout and scream with excitement and let everyone know about each small step, as it is such an achievement. I know some of this is normal for any parent, and so I hold back too.
What I am remembering is that at any age achievements need to be celebrated for each child. Each child is unique and they will achieve at the age and pace that is right for them. Yes there are times that help is needed because something isn’t working properly etc, but that is also ok and good. I am a proud mum, and I’m not sorry for that. I am my boys biggest champion in the world, and I always will be.
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