Month: July 2018

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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