Category: Parenting

Getting Our Kids Back To School

The time is here, in the UK, for our children to be returning to school for the new term. This can often be a time of mental relief for us as parents but also of anxiety. Anxiety for us and for our children. After six weeks or more with all the children at home, I feel like we have slipped into our own routine again with our own strategies for coping and making it all work. More down time and rest of sorts. Right now, I’m thinking about getting up much earlier and being far more organised and organised for the children to reduce the morning stress as much as possible. Work is also ramping up again for me now after a ‘break’ of sorts, although I have been catching moments to work quietly behind the scenes.

As always, I think the only way to make the transition as smooth as possible is to be as organised as possible. Some of our children will be going into a new year, a different part of the school, a new set of teaching staff, new subjects or a whole new school. Our human experience as adults tells us that things will be ok even if they are tricky to start with and that these are just moments in our lives, which all progress and move forward. It’s not so much the case for our children. They don’t have the experience to know this or often the emotional resilience to manage the situations. If, like Freddie, your child has a learning disability that can add a whole other dimension to the challenges.

I’ve been taking this past week to make sure Bella knows that I’m here if she has any questions about going back to school. I’m reminding her that the schedule will be changing to give her warning. Overall, I think she will love being back at school. I also think that Freddie will love being back at school but now I know that he has some issues with anxiety, I am getting organised and planning his social story about the return. The new teacher and new TA’s, the new children in his class. The name of his class and where in the school his classroom will be. I’m making sure that I have done my bit at home to decrease the anxiety as much as possible. Working on the bits that I can control.

Often, a big element of stress or anxiety for us as parents of kids who have special needs, is worrying about all the differences they have and how that impacts their time at school. Worrying that the new teacher won’t ‘get them’ and that their classmates won’t include them. That they will struggle each day. We absolutely are our child’s expert. We do know them best and we are their biggest advocates and want best for them. So, what are the things that we can do, things that we can control, about this period of transition? How can we decrease the worry for all of us? Often when we feel anxious we can go full on into defensive mode, particularly with teaching staff.

In my experience, the Velvet Bulldozer method works much better than charging in head first with demands, information and requirements. This needs to be a strong and positive ‘working’ relationship between you and your child’s educational care givers. If you haven’t already met the new teaching staff, an idea might be to write a letter or an email introducing yourself and your child. Tell them that you want to work together to give your son or daughter the best possible experience this year. Tell them that you have a few concerns and would like their help in working through them. Ask for a face to face meeting in the first few weeks if it’s possible. If not, a phone call would be the next best thing.

Get them on side. Apart from the odd teacher who isn’t in it for the right reasons and lacks the compassion needed to teach successfully, most teachers see the bigger picture and want success for all. Don’t forget, they are people too, with their own stresses and worries and fears for the year ahead and their home life. Teachers are not robots.

The aim for me, is always to start these conversations off in an open and honest way. Make an ally of them and work towards them having understanding and compassion of your child. Encourage them to advocate for your child alongside you.

If you feel unsure about what to write or how to advocate in this way, there are lots of resources available on the www.understood.org website. It’s based in America so for those of you in the UK or further afield, some of the contents might need tweaking but it’s a great base to start from. There are links to downloadable intro letters for the new school year or for visual plans to prepare your child for the transitions.

Good luck everyone.

If you are the parent of a child with special needs, you should join my closed Mentoring Facebook group, CEO of My Special Needs Family. You will find regular tips, help and support to keep you going and a supportive community of like minded parents and carers. Click here and request to join. See you in there. Xx

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Just Like Me

I have always taught Bella to include other children in her play ever since she could talk. If she see’s another child who is alone, then I encourage her to make contact. She knows the line “Hi my name is Bella, whats yours? Do you want to play?” I also do this to give her confidence which she will build on as she grows up.

I don’t have any siblings so when I was young and we were away on a family holiday, my parents would say “Right, off you go, you have 24 hours to make a friend.” They weren’t being mean, they were encouraging me to get out there and meet people. I didn’t have ready made friends to play with in the form of a brother or sister and I was sometimes shy as a youngster. It felt awkward at first but it did help grow my confidence. I’ve never been short of friends and I’ve always been able to talk to anyone at work or in a social setting. So as shy as I was, thanks Mum and Dad for the lesson, it serves me well now.

This skill set is also valuable when we are out and about and see other families who’s children have additional needs and disabilities. During the hot weather of the summer break, we have been to a number of parks with splash pools and in a recent visit my Mum and I took Bella and Freddie out. Most often we are the only family there with a child with SN. This time though I saw another Mum with her two children, one neurotypical and the other in a wheelchair. I thought, bloody hell she is brave coming out here alone. She has got way more guts than me. I could see people staring at the family and her discomfort. I felt it too. It stings. You so want to blend in but you just don’t.

I wasn’t sure what to do. My heart wanted to go over and talk to her but I wasn’t sure if she would want me to. Lets face it, it depends on how your day has been so far doesn’t it? I asked Bella to go over to the little girl and see if she wanted to play. I told her that I could see her Mummy needed to focus on her brother just for the time being so it would be nice for her to have some fun. Off she trotted and they played together. Freddie didn’t really want to get in the water this time and was happy playing ball with my Mum. So, I decided to take the chance and go over. I’m so glad I did. She said how uncomfortable she felt, knowing people were staring. I offered to help and just be there. What a lovely Mum. We chatted a little and I watched her little girl with Bella whilst they found somewhere to change. Sometime just having that little bit of support from someone else who understands can give you a boost.

So, if you see another parent struggling and perhaps you don’t have a child with Special Needs but you do know how good it feels to have a friend with you, go over and say hi. We don’t bite.

That little skill of being able to go up to a stranger and make a connection is so important. It helps make the world go round. I know I have always been grateful when another parent has seen me. I mean, really seen me, with compassion, and they haven’t been afraid to talk.

 

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Parental Burnout

I’ve been listening to loads of Podcasts lately whilst running and walking my dog and a common thread which resonates so much with me is that of Parental Burnout. One Podcast I listened to said this Burnout is at epidemic levels. I can personally relate to this so much and I speak to many, many fellow SN parents who are also at the point of Burnout. I have so much I want to do with my mind, for me, work, my family and my own interests but often my body just isn’t physically able to let me do it. I have the most free time in the evening once the children have gone to bed but it’s when I’m at my most tired. I’m sure you often feel the same.

I have become much better at managing this on a continuous basis because the times when I wasn’t (for which there have been many) once I reached the tipping point, I couldn’t get the balance back. It takes focus and practice. As parents, especially as parents of children with additional needs, we have so much on our plate. There is more of us being given out than there is coming in. You can’t walk away and you can’t sustain living at the level of Burnout indefinitely. When your child has additional needs/disabilities it is common, as will be the case for us, to be the parent and carer for the child’s whole life. I used to think that I’d have children, they would grow and go to college or Uni or go travelling and then have a life of their own. Once they were independent, we would do so much with our lives again. I am always determined not to allow disability to define us or stifle us in what we want to do with our lives but I am also realistic that what I had envisioned, will likely not be our reality. Balance is therefore essential for this long-term role I find myself in.

The ways that I have worked at getting a balance back, to allow me to re-charge both physically and mentally are varied. Running has been a huge change for me this year and has made a big overall impact. It gives me time away to have silence or listen to a Podcast, Audiobook or music that isn’t Peppa Pig. It has taken me until this year to realise that the times when I cope the least well are when I have no time for me during the day. You know the kind when you can’t even go for a wee on your own. The past three summer holidays in particular, after having Jago, have been crazy busy and I was genuinely on my knees by the end of them. I decided to take charge of the situation this year. The fabulous Grandmas are helping us out hugely again and I have even got the odd totally child free day to re-charge. With Ollie’s work schedule so manic during the summer, I also took the decision to pay for the occasional days respite. Last week the lovely Emily came and although this time I didn’t leave the children in her care, she helped me take them to the Cinema. Something I just couldn’t do alone. Freddie needs constant attention during the film and that coupled with the number of times Jago required a wee break, none of us would have seen any of the film. Bella got to see the whole thing through. She loves films just like me and Ollie. It was like having two of me but with one they all actually listen to. Hurrah. I also got to walk the dog and do half an hours work whilst she was with us. The best bit is that they all love her and Freddie trusts her. After she had gone, Freddie said “It was nice Emily come to our house. I love that.” For so many of us, it is such a challenge to find someone who is unflappable, especially with your child’s additional needs and someone who is trustworthy, kind, trained and ‘happy’ to do personal care. I’m incredibly grateful.

The SEN Tribe Challenge

My challenge to you is, I want you to list five things you do to keep the balance for you. Plus, two extra things you want to be doing for you, which you will work on weaving into your life over the next six months.

If you are at total burnout stage and are genuinely not doing anything for you, I get that, I’ve totally been there and for quite some time too. In this case, I want you to list three things you want for you, time to read, physical exercise, time out with friends, date night, taking up a new hobby. You could get stuck in to some adult colouring therapy. I saw these ones which cracked me up. Calm The F*ck Down, A Sweary Adult Colouring Book or A Swear Word Colouring Book For Adults. You might want to start watching a new box set or go to the cinema regularly, getting physical help in the home or talking more to parental peers for support, whatever it is. Write down three things you are going to work on making a part of your life over the next 12 moths.

 

That might sound like a really long time but I had a list of ten things to improve my life, balance and way of coping and it took me five years to finally tick off the last one. Physical Exercise. I only started running this year. It takes time and you need brain space to make it happen and it’s a continuous practice but you can absolutely make it happen with a little determination and the help of a good diary to schedule things in.

Email me at aimeemannmentoring@gmail.com or reply to this thread with your lists. It helps to share and give each other ideas for things we can do.

Good Luck. xx

 

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The Dreaded Dentist

We have been taking Freddie to the Dentist for quite a few years now and for the past two we have been seeing a really great lady to understands Freddie and has loads of patience for him Bella and Jago love going because they get a sticker. Ah, the holy sticker. I wonder how many years this will bribe them in to going. It’s like the bribe, sorry the joy, of getting a lollipop at the hairdressers.

Freddie has always hated it. Seemed worried and anxious. I think with his sensory processing issues, he just hates the purple latex gloves and you have to be pretty quick getting a look in there before his teeth clamp shut and you risk loosing your finger. About a year ago, his SALT from Skybound suggested we take the Talktools sticks with us to insert into his mouth to hold his jaw open. That certainly helped to get access to look at his teeth but it didn’t seem to help him be any less stressed about the situation.

Anyway, with perseverance, kindness from the Dentist and lots of prepping him, this time was a total success. I definitely think it was partly to do with the fact they had a fancy new piece of technical equipment. It is a camera which looks into the mouth and shows the images on the screen in-front of you. Tech obsessed Fred was very happy. Plus, we let him take his ball with him this time.

This was such a positive result and milestone. One I never really expected us to get to. Freddie surprises us every day. xx

 

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The Heart or the Head

Freddie got hooked up again today for another ECG before we got the results of him wearing a heart monitor for three weeks. That was eventful. For a boy who loves to press buttons, we weren’t sure how many of the readings would be real and how many would be Freddie just pressing the button. (He is only smiling because Ollie gave him his phone. He hates the sticky pads so anything to distract him.)

 

 

For two years now he has been experiencing, what look like, absence seizures. His Neurologist isn’t convinced because although they look like it and sound like it, they don’t happen often enough. The thing is though, nothing with Freddie has ever been straightforward black and white. I’m grateful it’s so sporadic and not affecting him all day every day but we really do need to find out what is going on. The parts of Freddie’s brain which haven’t developed typically, mean that we have always been advised to look out for epileptic activity. It’s so hard to know what we are seeing.

Anyway, the Neuro wants to rule out anything untoward going on with his heart before we have any more discussions.

Obviously, we don’t want him to be having absence seizures but if that’s not what it is. Then what’s going on?

So, after a fairly frustrating appointment (that’s a story for another day) cardiology are as certain as they can be that it’s nothing heart related. That’s a relief but now we continue without an answer. Back to the Neurologist we go. xx

 

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Special Education V Mainstream. The School Report.

The end of term brings the school report.

Freddie and Bella’s both came home in their school bags today. They are poles apart in style and length. This is Bella’s first one and focusses on her reading, writing, maths and science skills plus all her likes, dislikes and personal skills including communication, physical development and social and emotional development. It’s quite comprehensive for a five-year old.

As I was reading through I was immensely proud of how well she has settled into school and it is heartwarming to know that although she was pretty nervous about things in the beginning, she has grown in confidence. At the start of the year, she was a little apprehensive about what the other children would say about Freddie. Would they ask why he was different, would they want to know why he didn’t go to their school, how would she explain things? We had some really grown up conversations last September in order to prepare her and build her resilience. As it happens, unless she hasn’t told me, no-one has asked anything yet. At least nothing of major significance. She was already friends with half her class, many of whom have grown up always knowing Freddie. The rest just haven’t asked. I know one day she will be faced with uncomfortable questions but I have tried to give her the tools in her ‘language’ and at her level of understanding, to help her respond with confidence and courage. Taking all of that into account plus the challenges we often experience at home and my concerns over how she is dealing with them, her report was fantastic. It’s given me confidence that all the talking we do is paying off. Her report said that she is developing compassion and compromise (i don’t see much compromise our end mind you), an exceptionally caring attitude towards others and can be relied upon to involve others. Inclusivity is a really important aspect of life for us and it was amazing to read that she carries this through in her approach to others too.

The report did also say that she ‘occasionally attempts to teach the adults a few things along the way’ which just made me crack up. That’s my girl. ‘Strong willed’ was another description of her personality. I just don’t know where she gets it from???

It’s hard not to compare the two reports. It’s hard not to read Bella’s and wonder what Freddie’s would have said if he was just leaving mainstream year 2 and if he didn’t have a severe learning disability. As the years go on I am able to compare less but it still stings at times.

The days before they started to annoy each other. They were still best buds here. 

Freddie can’t write his name, only the first letter and can’t read or write but he has bags of personality. His report said that he is a popular member of the class. We all want to be popular, right? He has improved in all areas of self-help (not too sure we are seeing this element in its full glory at home mind you) and he LOVES ball games and PE. He meets all challenges with enthusiasm and strength.

Even with all he contends with and all the challenges he faces, he still has enthusiasm and strength. Wow. 

They said he has a wonderful nature and a fantastic sense of humour. He does. He really does. His teacher said he has grown in confidence and she is sure his transition to upper school will be successful.

Considering how things could be and considering all of his special needs, he is a total trooper and his personality shines through. It’s unlikely we will receive a school report detailing his academic achievements but our main goal is for him to be happy, content, have some independence as he grows and have a purpose in life. I’m feeling confident that he will excel in these areas. I’ve always believed anything is possible and this is how I will continue.

Before children, I thought we would have the typical life. Get married, have children, watch them grow, go to Uni or straight to work or maybe travel. Then we would travel more and perhaps help out our children and maybe even their children. Bella and Jago will no doubt follow a path similar to how we imagined but Freddie won’t. It’s not always easy to accept but ‘it is what it is’ and whatever our children, all three of our children, achieve along the way I know we will be proud. As long as they are happy and having as much fun as possible along the way, it’s really all I ask for. xx

 

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Getting Poo In My Hair…

Getting poo in my hair was certainly a highlight today.

Grim.

Apart from that, Freddie had an orthotics appointment and hurrah his feet have grown a little so some funky new shoes have been ordered for him. Jago came along for the ride and all in all it went fairly smoothly.
Freddie is always so super excited to go to school but for some reason he wasn’t this morning. Luckily, school is only five minutes away from the hospital but he was really sad and clingy when we got there.

I felt really sad having to leave him.

It’s so unusual for him to react that way. The great thing was though, that one of his TA’s came to collect him from reception. She scooped him up and cuddled him so he knew he was safe. She made him laugh a little. She told him what she had ordered him for lunch but asked if he wanted something different. They were going to go to the kitchen to choose again. His school teacher and the team around him are so genuinely caring and loving that although he was crying, I knew he was loved and seemed a little happier when she said he could get all the balls out to play with. He said he loved school when he got home. Phew. xx

 

 

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Happy 7th Birthday To Our Biggest Little Boy, Freddie.

Happy 7th Birthday to our biggest little boy, Freddie.

From being told at my 20 week scan that our baby’s brain wasn’t developing right. To the endless tests and scans. Being told no-one had any answers but being offered a possible termination, by panel, up to 39 weeks. Freddie was born, totally spontaneously, at 35 weeks.

We were so frightened that he wouldn’t arrive safely that we had no baby stuff at all. Nothing. We didn’t dare buy anything. So, during our stay in SCBU with the amazing staff there, Ollie went shopping. Greeted at the door of Mothercare, I think the shop assistant could see the look of shock on his face and took pity. Freddie was teeny so we needed teeny everything. She took him round the shop and he got everything we needed for the time being including a car seat to get him home. Thankfully a good friend of ours donated their old cot, feeding chair and travel cot. Phew. Ollie got the whole room ready and all the furniture built in time for his arrival home.


Even after all the scans we have, over 15 weeks, we never found out if our baby was a girl or a boy. We wanted to have just one surprise and surprised we were. Ollie was due on a plane that weekend for a wedding and my mum was away on holiday. She said as a joke, don’t go having the baby will you. She thought Ollie was playing a practical joke on her when he called Greece to tell her I was in labour. She managed to get on the only flight of the week out of there and made it back 24 hours after he was born.


With all the conversations we had with the professionals around what Freddie was unlikely to achieve, he surprises us each and every day. It hasn’t been easy and it will continue in that way but boy do we love and adore him. I don’t really believe in using language like ‘fight’ when talking about the challenges we face but in this instance, I will say that I have fought so hard every step of the way for my little teeny weeny baby. Right from 20 weeks pregnant to the grand age of 7. He might have nearly driven me crazy this week by saying “Mum” about 3 billion times (on top of the 2 billion Bella and Jago have said it) but what a star he is. We love you Super Fred. Xx

He was soooo excited when he saw his birthday gift. Ollie is pretty chuffed too, especially as he spent a few hours putting it together in darkness last night to be ready for this morning.

 

 

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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.