Category: siblings

When You Have To Admit You Are A Family With Special Needs.

This might seem a weird thing to say. Especially when it is clear that Freddie has Special Needs. I’ve always known this, even in the early days of denial. Of course I have. This is different though. This was the moment I realised that Ollie and I and Bella and Jago also have additional needs which require support.

Our needs are not due to a disability but they are as a result of Freddie’s.

Up until now, everything I have been working towards has been focussed on advocating for Freddie. Getting him everything he needs in order to fulfil his potential and happiness. Advocating for him is something I will always do. I have also been working  hard on  my resilience the past few years, in order to keep going and thinking about how to support Jago and Bella as they grow. That that isn’t enough anymore.

I’m not shy in asking family and trusted friends for help or a favour but this is the next level up. We have always coped well in most areas but life is changing. Things are supposed to get easier as your children grow but we are in some respects, finding the opposite. I am having to change my viewpoint on how we are coping. Physically it is getting more challenging for me and for Ollie too to some degree. Plus, I admit I get freaked out at the thought of taking all three somewhere, like the park, on my own. To the point where, I rarely do. It’s hard work with the extra support that Freddie needs. I see other Mum’s out there with their three children  and feel like a bit of a failure that I don’t do that with ease. However, the Mum’s I’m looking at, in general have three neuro-typical children in tow, so I try not to beat myself up for it.  I’m getting better at it as Bella and Jago are becoming older and more self-sufficient so that’s a positive.

We are also tied to time with Freddie’s school drop off each day. This impacts what out of school activities Bella can do and those which Jago will want to do. The Mummy guilt always steps in here. I am doing enough for each child? With thanks to a good friend, Bella gets to go to gymnastics once a week so the pressure is off for a little while. What happens as she gets older and wants to do more? Weekends are a challenge with Ollie’s work schedule and Freddie being at his most tired and challenging on a Saturday.

All these little things that seemed a normal part of family life (in my vision of what I thought it would look like) I used to take for granted. The things about raising children that never occurred to me are starting to show up.

These are just a couple of small examples of the challenges of wanting to and trying to run a typical home when the family has additional needs. They are minor when read in isolation but add those to all the challenges on a daily basis, both physically and emotionally, including all the meetings/therapy/behaviour challenges/paperwork/organising etc it all gets so overwhelming.

I have always been determined not to allow Freddie’s disability to define me or us as a family and this is a belief I still hold. What I’ve realised though, is that in order to keep to that way of living as closely as possible, we need help. We are not a typical family. Freddie needs a PA, he needs respite and we need respite. Bella and Jago need respite. We need it booked in and organised. I need more physical help when Ollie is working the incredibly busy summer season at work. I don’t do failure very well and I’ve always had the determination that I can achieve anything. These wobbly times have been rocking that belief a little. I haven’t liked it. I also don’t do being out of control very well. So, with the things I can no longer cope with, I’m taking control in another way. Admitting we need support and going and getting it before it gets too bad. It hasn’t been easy to admit I can’t cope. It’s taken being close to breaking point and ‘encouragement’ from my family and friends little by little to get sorted.

Note to self: don’t be so stubborn and take more of my own advice.

xx

 

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Bella Is My Superhero

My children surprise me all the time. They infuriate me, drive me bananas, make me laugh, swear and cry but I love them all with all my heart.

Even during the toughest times, there can be shards of light. 
The past few weeks/months have been, at times, totally exhausting and mentally draining for me and Ollie. We have been at breaking point often.
Freddie has been experiencing some challenging behaviour, pretty close to what looks like a panic attack. Other times, he is just screaming blue murder. Most mornings and most evenings. He never does this at school and rarely in front of anyone else. We can be with friends and they don’t see it and he doesn’t do it to his Grandmas. This is a huge positive but also frustrating that no-one really sees what we deal with.
We are taking to school, our GP, Skybound and a specialist Paediatrician to see what we can do to help him. And us.
However, a really big concern of ours is how it all affects Bella and Jago. It takes time away from them. It causes friction and upset in the house and makes us all very tired. Jago is too young to understand what’s going on but these things still affect little ones. Bella on the other hand is only five years old but understands so much more. She says such grown-up things at times that I wonder where she gets them from?

Her words often cause me to silently cry whilst we have our last cuddle at night. I don’t want her to know I’m hurting but the tears just come. Sometimes through sadness and sometimes because of words which are bitter sweet. A couple of weeks ago, after a particularly bad evening, she said “Mummy, I wish Freddie’s brain hadn’t been injured before he was born. Then he wouldn’t scream so much.” Me too. It nearly broke me hearing those words. Her understanding was key. She is so knowing.

We have had some other pretty upsetting conversations about how she is feeling but I’m always grateful we are close enough that she can talk to me. These lines of communication are essential. I hope this will be the same state for Jago as he grows.

You remember I said at the start, “Even during the toughest times, there can be shards of light.” Well, last night we had one of those bright moments.
Freddie was having what appeared to be (most likely was) a panic attack and I was flying solo for bed time. It was horrific but Bella was amazing and Jago too.
After it was all over, Ollie was home and Freddie was calm and happy, we had our last cuddles of the day.
I told Bella what a wonderful sister and daughter she is. How much I appreciated her help and how much I love her. We talked a little and she said “Mummy, I know I can always count on you.” I responded with “Of course. Always and forever.” And then she said “And you know you can always count on me don’t you Mummy? And Daddy and Freddie and Jago. Oh and Teddington, they can all count on me too.”  What an amazing, sweet and brilliant little girl.

Siblings of children with special needs have it tougher than those without, for so many reasons. They struggle with their emotions and feelings but hopefully with the right support we get through it together.
Bella is my Superhero.

Why We Went On To Have Two More Children After Having A Child With Special Needs

A friend asked me this weekend why we decided to have three children? There was no sarcasm or malice in the question. Just simply wondering and genuinely interested. He knows that Freddie has Additional Needs and wondered how we cope?

Sometimes ignorance is bliss.

When we found out at my 20 week scan that Freddie’s brain wasn’t developing correctly and after all the scans and tests that followed until his pre-term birth, our focus was just getting him here safely. We had no diagnosis, didn’t have a clue what the future would hold and had never really thought about anything genetic. However, we had always wanted two children and I think that because we could ‘hide’ Freddie’s needs when he was a baby and pretend to ourselves that he was going to be ok, we decided to go for it pretty quickly. Living in denial was probably quite blissful at the time. I became pregnant with Bella when he was only nine months old. Perhaps if we had left it longer, we might have made different decisions? I don’t know. It was around this time that the hundreds of appointments and therapy sessions really kicked in. I was one exhausted pregnant lady. We got through it though and were so excited to have our beautiful little girl.

When Bella was around three months old, we were invited to attend genetics counselling. When I look back, we were so naive and innocent and actually right in the centre of total chaos. The Dr asked how our new baby was, did we think she was developing typically and did she have any dysmorphic features? Time just stood still. I can recall every prickle of fear as if I were in the room now. We honestly never considered for a moment that Freddie’s needs could be hereditary and we also didn’t know there was such as thing as De Novo Genetic changes that occur. No-one had ever spoken of this other than the more well known syndromes they tested for regularly. What a shock that was.

We went onto the DDD study and waited.

During this time, I never threw away any of their baby things. Hoarded everything. We were only having two so what was I thinking? I called the geneticist a number of times hoping the results would be round the corner. Nothing. Our main concern was finding an answer to enable us to give Bella all the information she would need for when her time comes to be a mum. If that is the path she chooses. We also wanted (and didn’t want) to know if Freddie’s condition was life limiting.

As Bella was approaching 18 moths, I realised she needed back up. I don’t have any brothers or sisters and as I’ve experienced more of life’s riches and heartbreaks, it would have been good to have that back up. So grateful I have Ollie.

We needed safety in numbers.

I didn’t  want Bella to feel pressure when she is older, perhaps when Ollie and I are no longer here. It’s tough managing these challenges alone.  Although risky, without a diagnosis, we weighed up all the options and all the solutions open to us. After a lot of discussion, we decided to go ahead and try for a third baby. Freddie’s rare diagnosis of TUBA 1A came after Jago was born.

I’m not really sure how Jago will take it if he realises he was back up? I’m hoping he will know he was born from a deep place of love for our whole family unit. He has made us complete and we adore every inch of him as we do Bella and Freddie. We are extremely lucky to have three children. I hope they remain close as they grow, lean into each other and realise they now have safety in numbers.

It’s Almost Impossible To Escape

October is a really shitty month for me. A difficult, sad and stressful month. The 23rd October brings around again the anniversary of my Dad dying, followed by his birthday on the 24th. A double whammy.

When I’m talking about Emotional Resilience, on here, Facebook or at my workshops, I am usually referencing it with regard to having a child with Special Needs. However, something I share is that it is also something I have been practicing in other areas of my life. Often that resilience is needed to cope with the big life events like watching your father die and at other times it’s dealing with smaller situations or perhaps how you allow others to make you feel.

Nine years on and in many ways, it doesn’t feel any easier. I’m not sure it ever will. However, I know the signs better now and have strategies to see me through. I arrived home from school drop off and walking the dog on wednesday morning. Ollie just knew, straight away, that I was crumbling. I hadn’t really been thinking about Dad or feeling sad but suddenly the swirl of emotion started to bubble up from deep inside. I totally believe having a god cry is essential. Let it all out and start again. Although, I hate crying because honestly, I don’t look or feel good for it. I’m one of those red, blotchy, puffy frog eye types of criers. Not attractive and requires multiple re-applications of make-up to look reasonable.

 

Can’t resist a cheesy 1980’s moustache & psychedelic shorts photo. Me and my Dad at the Duxford Air Show.

Within the Getting Your Voice Heard Workshops, I talk about getting into the right state to cope with upcoming events/meetings etc. Within that practice is understanding that we experience life with all of our senses – taste, sight, touch, smell and sound. This is also how we remember our experiences. That’s often why you will smell a fragrance and be reminded of a loved one or perhaps, like me, the smell of Skips reminds you of the time you ate too many as a child and vomited. Never ate them again I can assure you.

This is what was happening to me. Unfortunately my senses weren’t allowing me to get into a positive state this time. The whole month of October was spent going to and from the hospice on a daily basis. Everything about the month of October reminds me and takes me back to that point. Walking the dog, how the air smells, the mostly sunny days, dew on the grass, cool in the evening, conkers on the floor and the light of the day, the rapidly approaching decay of life and of season into Winter. It’s almost impossible to escape it.

So, although I am often taken by surprise, I am more aware and prepared for it. I advance book to see my Osteo, one of the only ways I can release the tension build up. I spend time with Ollie and the children because apart from the fact that I love them, it’s almost impossible to have two minutes to myself to get caught up in how I’m feeling. I have failed slightly this week but I’m conscious of getting an early night. Everything is so much harder to cope with when sleep deprived. I take big doses of vitamins,  try to eat well (on top of the chocolate for comfort) and drink more water. Seeing friends for Prosecco also seems to help. Who knew? Getting the balance of distraction and rest is key for me.

This is how I cope when I’m dealing with more stressful times with Freddie too, which is why we talk about all of these things to understand what emotional resilience is and why we need it.

The past few weeks have also required me to try to impart some of this to my four year old, Bella, as she started school this September. New environment, new friendship circles, new rules – new everything. It’s mostly extremely positive and exciting so far but unfortunately, there has been an older child who has been ‘picking on’ Bella and her classmates. Nothing particularly serious but a little daunting non the less when you are only four years old. We have talked about how she can handle it and what course of action to take. I too have, of course, raised it with her teacher. I hope I’m giving her the right tools to deal with it, especially if at any point it becomes more serious. Something I am incredibly mindful of though is that children and adults for that matter, rarely act out unless they are struggling. Perhaps the child is unhappy, worried or fearful about something and feels more in control when behaving in this way? Who knows? What I do know is that the child needs compassion and support. The earlier it is spotted and worked through, the better for everyone. I also know how I would feel if it was my child behaving in this way. I would be gutted. It’s possible for any child to start acting out for a whole variety of reasons. I’m conscious that being the sibling of a child with special needs brings with it many emotions and challenges. I can only do my best to give her the resilience tools she needs and hope for the best. If she was ‘picking on’ others I would hope for compassion towards her and to me as her mum until it could be resolved.

Emotional resilience is always a good thing to practice. We are human and humans suffer at times. We need compassion and ways to cope so that we can enjoy life during the fantastic times.

Keep an eye out for the next set of dates in November for both Getting Your Voice Heard – How to be a Velvet Bulldozer and Emotional Resilience – The Ebb & Flow of a Special Needs Parent, in conjunction with Entrust Care Partnership.

Ax

 

 

 

 

 

A Siblings Struggles

Sometimes siblings find home life a bit of challenge living with Special Needs. Bella certainly struggles at times and doesn’t always seem to know her role within the family. Freddie is older and yet ability wise he is so much younger so it can be confusing for her with a younger brother as well. She does act out at times at home (you can usually find me pulling my hair out drinking gin) and needs more mummy/daddy time but she is a brilliant, smart, funny and a loving daughter and sister. We had her report today from Pre-School and we were blown away. She has made so many friends, grown in confidence and ability and she is caring and fun. Reading all these wonderful things gives us some confidence that even though it can be tough at times for her, she is going to be ok and thrive. A true Wonder Woman. So proud of my beautiful Bella Boo. X