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

What is ok and what is not?

100 Quotes on Life that'll Bring Alive a New You & Change You Forever!!

One of the things I have found in the last few weeks and months is that my perceptions of what is ok and what isn’t are changing. Some of this is through psychotherapy, some of this is through experiences, some of this is through talking with friends.

I have seen things posted on line and shared in several places that are unhelpful and unhealthy. Images and quotes that have made me doubt myself, my opinions and my decisions. Things that have made me question those around me. There are 2 things I really need from those around me at the moment….consistency and loyalty.

When I say this, I don’t mean in a pompus, clique-y or sorority type way. But I mean in a way where I know who I can and can’t rely on. What is going to be stable in both mine and my families lives. What is going to be helping lay the foundations for who I am becoming.

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I’ve also seen things about who to rely on. And that online support is unhealthy, is unreal and is living in a fantasy world. For me, in reality, some of my friends that I know mainly in an online or digital capacity are some of my greatest support. Some of them I have met once, some of them I have met several times, and some of them I have never met, but they are their to support me, to encourage me and to help me achieve the best in who I am. They counsel me and help me process, in the same way that friends I see face to face do. In fact, some of those who are digital friends are the people I see frequently face to face. But that doesn’t mean that those who I have never met are worth any less.

With my depression and anxiety, friendships are hard to maintain. I know that they take a huge level of understanding from my friends and my support network. People need to know that I need to know who I can trust and when and where I can rely on them. If people let me down, then I will walk away as the energy that relationship takes from me needs to be invested in my family and other relationships.

What’s worse though, is that I know I am not the only person experiencing this. For many of my friends with a baby under 1, friends have become a rarity. People aren’t being bothered to take the time to invest in them now their priorities have changed.

New mums need the support the most. Whether it be a new mum for the first or the fifth time. Every new small person into a household mix takes their mum away from the “normality” that existed pre baby. But that doesn’t stop the mum from caring. It is then that she needs it more, but has it the least. So be a friend. Don’t stop caring cos one day you’ll try to care and it will be too late.

Depression Quotes and Sayings About Depression _ HealthyPlace

 

Insecurities… not seen by others but can be crippling

I live every day feeling that I’m not good enough at the moment. My insecurities can be bad at the best of times, but at the moment they are huge. My insecurities trigger moments of jealousy, self doubt, feelings of neglect, of being over looked or left out.

People can say “Don’t be silly!” or “It’s all in your head!” but that doesn’t take away the feelings. The feelings are strong and are real. Some moments are worse than others. Seeing things posted on social media that you weren’t invited to, but would have loved to attend, seeing other friends getting together without you, hearing about plans made. This doesn’t mean how I’m feeling is right or justified, but it’s where I’m at.

When I say I have anxiety, it’s not just about practical things, it runs into feelings and emotions. It affects my self worth. It affects my self belief. And I hate it! I hate doubting my friendships, my relationships, my capabilities I hate feeling inside that I’m inferior. Some days it makes me want to just walk away from everything and live in a bubble with my family.

The triggers are varied and unpredictable, which doesn’t help others really. It can range from lack of sleep, to absolutely nothing I can pinpoint! And then it eats away. The damage it can do can be long term. I’ll often, when really struggling, choose to cut myself off from people, from the world. My head is saying ‘If people can’t be bothered with me, then I won’t bother with them so they can’t hurt me!’ But on the flip side my heart is screaming ‘Please let me know you value me, you want me in your life!’

Little things can make a huge difference. But also no one should feel that they have to acknowledge. I never truly appreciated the value of the words “thank you” till my insecurities and anxieties took over. Someone acknowledging you and saying hello, or checking in can make such a difference.

I know over time these insecurities will fade and be less of a struggle. But these struggles are real and they are a battle. They can be exhausting!

Zzzzzzzzz…. what is sleep?

This image makes me smile, as it’s one of the big tips you get given when pregnant, ‘Sleep when the baby sleeps’. Ok, so that might work when you only have 1 baby, and that is still banking on the baby having good naps in the day, and you being at home and vaguely in a head space for sleep. But this doesn’t work when you have a toddler.

Yes my toddler still naps, but invariably not at the same time as the baby. It is also currently the only space where I can eat my lunch in peace, without my food being stolen. It’s also the hour or so in the day where I’m able to watch adult TV! And by that I mean indulging in my trashy tv love of old soap reruns! There really is a limit to how many times I can watch Paw Patrol in a day!

So daytime sleeping with 2 is a rarity! But recently for us, night time sleeping has also been a bit of a rarity. The baby had been waking every 2 hours for feeds, which when a feed can take 20 mins meant I was only getting sleep in 90 minute blocks. But then the toddler decided to embrace the sleep regression that can come at 2! He decided that for about 2 months, the day started between 4 and 5am! He was also waking at least once in the night. And generally it had to involve mummy cuddles no matter how many times daddy would go.

I am very blessed to have a husband that will get up early with the toddler, and take the baby if she’s not feeding, so I can get a couple of extra hours sleep. (We’ve also learnt the hard way that for me this can be quite essential, as I stuffer from migraines, and not getting enough sleep is a huge trigger.)

You’ll notice that I’ve been writing this in the past tense, and that’s because we’re starting to see a change…. the toddler has gone back to sleeping through the night and also not waking till 6am! And in the last week, the baby has done a huge shift and is only waking once! I’m not counting my chickens, and I know it can all change again at the drop of a hat, but for now I’m making the most of a bit more sleep.

Sorry to friends who are about to start this journey with a second, if I’ve shattered any dreams! And I’d love to me the person who first coined the phrase “Sleeping like a baby”! I would love to meet the baby they were referring to!

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!

The look of peace

Today I had one of those treasured special moments, that after 14 months is already becoming less of an occurrence. In fact this was the first time it had happened in a few weeks. My little boy curled up in my lap and fell asleep. I loved just watching the look of peace wash over his face as he dropped into a deeper sleep. It seemed a long way from the little boy who 30 minutes earlier had been emptying the bookcase at a rate of knots to find his favourite lift-the-flap book!

It was so calming to watch too. For a few moments i just treasured the peace. The calm. The quiet. Not times that regularly occur with our delightful, lively little boy. It surprised me at how much I had missed those snuggly moments of a newborn sleeping on me.

The flip side to this is actually I cherish the moments that he is asleep in his cot. It took several weeks of perseverance and feeling like it was never going to happen before we got him sleeping in the cot, and then longer till he would fall asleep in the cot. I knew we needed that to happen, for my sanity and for our life as a couple and our time with our older son. Looking back, now, I know some of it we bred ourselves. It came from a place of love, of exhaustion, and of wanting to protect our fragile tiny baby, who had had so many challenges put in his way, that we didn’t want to add another. A sleeping baby means I can have an hour (or 2 if i’m lucky) where I can have some me time, catch up on work, do some housework. It means I can recharge my batteries for the next stage of the day.

I find the constant need to be entertained draining. I adore my sons, but I am so very aware about how much space and time I need for me. These days it often means going to be before 9.30pm, just so I can curl up with my book for more than a page before I fall asleep. I know my time for knitting will return in time, and that I also wouldn’t change where I am in life for a moment. My writing is my space to express, and to be me. So here you go. Peace!

Doing things for the last time for No 1

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Today I have loved seeing posts on social media from family and friends as the big September return to school starts. 4 years ago today I shared the post of my eldest as he started secondary school. But I’ve also found the start of this week emotional. Today I labelled up his school uniform for the last time. We went out and bought the stationery to cover a mass of subjects for the last time.

Tomorrow my son starts his last year of secondary school. He’s starting this year taller than me! He’s starting as a Senior Prefect. He’s only got just over 2 terms of school left. Next month we are going to look round his potential sixth form college. We’re talking about choices that will have an even bigger impact on his future.

I know he’s growing up, and enabling him to become the independent young man he has become I see as one of my greatest roles in life. He’s an amazing son, friend, big brother, leader, discipler. But he’s also in many ways still my baby. He’s the baby I held in my arms seconds after he was born. He’s the boy I’ve picked the pieces up of after accidents, the boy I’ve cuddled on the tough days and celebrated with on the good days.

I’m sending him out to school tomorrow confident that however hard the next few months are, he will certainly give it his all, and do it with us and God on his side. So yes I’m going through some “lasts” but we are also going towards the next season of “firsts” and I am excited for him and what his future holds.

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The beautiful parenting bubble goes pop!

When you are planning a family you have your dreams, your ideals, your perfect scenario.

  • The perfect gap between children – I’d wanted 2 years between mine
  • The perfect family set up – 2.4 kids, nice home, be around to support your children as they grow
  • The perfect pregnancy – blooming for 9 months
  • The perfect labour –
  • When your child is born the perfect baby – follows routine, eats well, sleeps well, meets development stages full on
  • You go out each day doing all the perfect mummy things with a perfect outfit, make up and hair

Hmmmm…..the reality is miles away from this.

I will hold my hands up and say that my dreams, even the second time around, were up there. Maybe I should have known better. Maybe some of my memories from 15 years ago had faded and gathered a rose shaded tint over time. But also I know I was lucky the first time around, I had a baby that slept well, was healthy and incredibly placid as long as the milk came on time!

This time, I am holding my hands up and saying yes I have been struggling. My perfect bubble has definitely gone pop…in fact it was a very loud BANG!

3 hours of uninterrupted sleep is now a luxury. The few nights that have been longer than this we can now see have been more linked to when he’s been on antibiotics. An achievement at the moment is being out of bed in the morning and showered before my husband leaves for work….if I don’t do it then, then it won’t happen till he is home in the evening. Getting dressed in something that is clean and reasonably appropriate for the weather is about all I manage. If I’ve had a reasonable amount of sleep, then the hair dryer might get out, and I might find my way to putting make up on. But that is certainly not the normal routine. High days and holidays maybe!

I have struggled with almost weekly appointments at either the doctors or the hospital. Having a little boy who isn’t 100% most of the time is tiring. The money spent on hospital parking is just frustrating! Having to constantly explain again and again symptoms to doctors is exhausting, especially when they say that “babies this young don’t get recurrent infections like this”. Each week I have to also remember to order the next weeks supply of formula. I have a baby who is even more allergic to dairy than his older brother and his formula has to be prescribed. Its not like I can  just go and buy some formula when we get low, and more often than not the pharmacy have to order it in. I even had to justify why I needed twice as much, to cover us going away and the bank holidays!

I look at the house sometimes and just want to cry at all the jobs that need to be done. I hate that in the evenings I am snappy at my husband and teenager because I am so tired and just need some head space. Going to be at 9pm is not my ideal, honestly!

Yes this is the reality. I wouldn’t be without my baby for anything. I’ll even consider having another in the not too distant future (not the next 18 months, but not another 15 years!) The reality is I find day to day tough. Some days are better than others. Some days I actually don’t feel tired at all. Other days I feel like going back to bed at 9am.

This blog isn’t for sympathy. I guess it’s for a normal perspective for people who want to read it. It’s also my way of processing and dealing with the challenges, and maybe just showing the world that parenting isn’t this beautiful bubble the is painted in the media.

This morning on Good Morning Britain, there was a wonderful slot showing the reality of normal parenting (watch here) and my friend Laura reminded me that life as a parent can be a juggling act, and I only have to juggle 2 children!