Month: June 2018

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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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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