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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SWAN UK Adventures

Hi, I’m Aimee and the Parent Representative for SWAN UK in Warwickshire. Today my Husband Ollie, swan Freddie, Bella, Jago, Grandma, Teddy the dog and I spent an amazing day at the Cotswold Wildlife Park with huge thanks to SWAN UK.

This is my third year arranging this trip and it has been so much fun. The fantastic Miriam Ingram from the SWAN UK office came along too and joined the madness of our family. We even made her come on the train with us. Managed to squeeze all seven of us into the one carriage along with the dog and a balloon.

It was so great to see lots of familiar faces and also to meet some new SWAN UK families. We got a great photo of us all.

We saw Zebra, Rhino, Giraffes, Meerkats, Cheetah’s and Lions plus some brilliant monkeys all chatting to each other and making a total racket and many more fabulous animals.

The children loved the play area, we had a picnic and ice cream. There is always so much to see at the Cotswold Wildlife Park, the layout is accessible and fantastically there is a Changing Places.

On the way home in the car, Ollie asked the children what their favourite animals were. Freddie chose the lions, Bella chose the Giraffes because they tried to lick her hand from the viewing platform and Jago chose the monkeys.

Thank you to everyone who came. I hope you all enjoyed yourselves and hopefully I will see you again soon.

 

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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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My Star of the NHS. I Salute You.

Dear Nicky

As we approach the 70th anniversary of the NHS, I want to thank you so much from the bottom of my heart.

Being told at my 20 week scan that my baby would be disabled but no one knew how severely, was totally shocking. Being sent home after the birth with no support and a ‘wait and see’ attitude from everyone around was frightening.

It wasn’t until we moved, when Freddie was around nine months old, that we met you Nicky. We had seen around four different Health Visitors between birth and nine months and none had really shown any support or understanding or in fact even read his notes. I hated those baby weigh in clinics. Then we moved and found someone who went the extra mile at every meeting and every phone call.

You made such a huge impact on our lives.

You read his file, you researched, you listened, you had experience of children who weren’t developing as expected. When you have no diagnosis for your child’s disability, it’s hard path. I remember Ollie and I going to the clinic to discus his nine month review. We started the questions and couldn’t answer yes to a single one. We felt so defeated and all the positivity (denial) we had forged on with was crushed. About half way though, it was clear we wouldn’t be able to answer yes to any of the questions. Nicky, you said we would leave it and not bother with it any more. Freddie was on his own trajectory so let’s focus on what he needs. Up until this point, no one had mentioned Physio, OT, play therapy, Portage or SALT. Bare in mind we had a paediatrician, four health visitors and the GP plus we had spent time in SCBU. We were pretty clueless.

 

You were the first person to really get it. You set up the referrals to the various therapies to support Freddie. If we hadn’t moved house and met you, I truly believe Freddie would have been a lot further behind in his development than he is now.

Thank you for caring, going the extra mile and making such a positive difference to his life.

Aimee and Family. xx

 

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7 Things I’ve Learnt From My 7 Year Old.

7 things I’ve learnt from my 7 year old.

Freddie has recently turned 7 and I’ve been reflecting on what a 7 years it has been. I’ve learnt so much more than I could ever have anticipated during this all-consuming, heartbreaking, joyful, overwhelming and love like no other time.

1. A wealth of knowledge. Considering I haven’t trained to be a Doctor, I have been asked more than once if I have a medical background by the medical professional I am seeing. I know more medical terms and information than I ever thought possible without actually being a doctor. All very interesting but I have to be honest, I wish for the most part, I didn’t know all of this.

2. How to communicate with family, friends and strangers with compassion, rather than anger. Both about our situation and in response to their, often misguided or insensitive, comments. This is a big one, not just for me but for so many families I know living in the SEN world. I’ve come to the conclusion that most people are good and kind. Most people don’t mean to upset you when they stare at your child. They are often just interested but can’t take their eyes away quick enough whilst their brain processes what they see. Many of the older generation don’t intentionally mean to use totally inappropriate language and ‘labels’. They use what they know from the era they grew up in. Most of the challenge here comes from a lack of education around these subjects. I see it as my ‘job’ to educate everyone on Freddie’s needs and this brings acceptance and inclusion rather than staring and fear.

3. Patience in the bucket load. For someone who is and always has been notoriously impatient this has been a very steep learning curve for me. I’ve had to learn patience in abundance. I’ve still not totally mastered the art but I’m better than I ever thought Iwould be. I’ve needed patience with myself, Freddie, life, the system and so much more. It’s an ongoing practice which I try to master daily.

4. People are kinder than you think. Most people want to help in any little way possible. Often they don’t know what to say or what questions to ask. They feel silly and unsure of your reaction. That old saying ‘It takes a village to raise a child’ is totally correct in my world. If you are feeling alone, vulnerable and isolated then just those few simple words ‘please can you help me’ often bring great reward. It takes courage to ask for help, I know. It might just be for something small but it might help you out hugely. Not everyone can help with everything but some people can help with some things. Those people might be friends, family or professionals. Give it a try.

5. You can meet some truly incredible people. This is certainly true for me. If I lived in ‘Plan A’ in a ‘mainstream’ world only, there are so many amazing people I would never have met. So many inspirational and kind people who I wouldn’t have the pleasure of knowing. So, for this I am grateful.

6. I am more powerful than I ever thought possible. This is you too. Eight years ago when looking into my future and the plans I had, I would never have believed how upside down my world would turn or how powerful and empowered I would become. I have had to get to total rock bottom before coming up and I still have those times when I feel broken but mostly I am up. I would never have imagined advocating for another human being in the way I do for Freddie and for the rest of my family. I would never have imagined I would set up a mentoring business to support other parents just like me. Building this tribe of empowered SEN parents is amazing and I love how far people can go with the right skills and mind-set. I never would have believed that after having Freddie and all the heartbreak and stress that I would think it was a good idea to have another two children. These three decisions have been three of my best.

7. Love. A love like no other. All parents out there will confirm, I’m sure, that they would lay themselves down under a truck if it would save their child. They would do anything for them. This is absolutely the case for me. Even when they are driving up the wall and back down again. As a SEN parent though, there is something even more primeval about it. I think it is because many of our SEN children can’t advocate for themselves, they are vulnerable and need support forever. The fear is real and the desire to give my all to Freddie and helping him achieve his absolute best is unmovable in me.

I love my husband and my three beautiful children more than anything. I’ve learnt such a huge amount in such a short space of time. I only hope I’ve got the capacity to learn more as Freddie grows and finally work out how to do fractions, tricky maths equations and English homework as Bella and Jago grow up. 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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