Tag: Never Give Up

A Breakthrough for Freddie

I feel like I’m living two parallel lives at the moment with Freddie and Bella. Bella just started reception and is flying. she loves all the new things she is learning and is chat chat chat about it all. I’ve even had to go to school for a lesson in Phonics and I am regularly told by Bella that I have got it wrong. “No no no. It’s not D for Daddy, it’s D for Dinosaur.” Whereas Freddie, mostly tells us about the fun things like playing bat and ball and swimming. He is learning academically at his own pace with his own targets.

I’m honestly slightly (extremely) nervous about how, as they all progress their school careers, I am going to fit in helping Freddie with his essential daily Speech Therapy, Bella with a plethora of mainstream homework (most of which I anticipate having to Google first) and get them all fed and into bed each night before they meltdown with exhaustion. Never mind how it will work when Jago gets to school! Eek.

We don’t talk a lot about academic results with Freddie, more focus on personal care and independence skills at the moment but I know School are working hard behind the scenes. Then, yesterday a lovely news piece came home in his book bag. He has been able to write an F for quite some time, he recognises his own name and he has letter recognition for all in the alphabet but that’s roughly where we plateau. Then we see he is working on the other letters in his name too. Trying so hard and doing so well. It’s just a bit of a proud moment for us really and I wanted to share his breakthrough. x

It’s a Miracle! Freddie is taking his first steps

Today is a happy anniversary in our house. On this day in 2014, Freddie took his very first and very wobbly unaided steps. He was 2 years, 9 months and 20 days old.

I remember when and where all of my children took their first steps and each time was so exciting but this was a true miracle. We had been advised at one time that he may never walk at all. Our elation and emotion was indescribable.

Ollie had taken Freddie upstairs to start getting ready for bed. Next thing, I hear is him shouting me to come quickly. Freddie was taking his first step on the landing. He had literally no balance but he had done it. Tears pouring down my face and laughter coming from us all. Freddie was so excited and laughing too. The more we cheered, the more he tried to do it. This was the beginning of some form of independence for him.


Freddie learning to walk fully independently took quite a few months, close to a year, made especially hard by his low muscle tone and lack of balance. However, with intense Physio, Hippotherapy, Rebound Therapy, the Snowdrop Program, the aid of a Kay Walker and some specialist support shoes, he was well on his way.


He did also have to learn to get up on his feet from the floor, negotiate obstacles and work on his perception of depth. Due to the small growth size of his Cerebellum he has to work really hard everyday on Proprioception and his Vestibular System. It causes him to be pretty wobbly and loose balance often. It possibly also accounts for his difficulties with speech. Learning and mastering is ongoing. We are currently working on getting up and down steps and ascending the stairs. I would love him to be walking up rather than climbing but he is proving his independence which is the main thing.

This year, pushing along to his sixth birthday, he has been attempting to run, which is fantastic. I don’t think we are going to have the next Usain Bolt on our hands but he is doing it and it makes him really happy. He still gets very tired, so we take a buggy with us when we are out. He can also be a danger to himself, not following instructions and refusing to hold your hand at times. We have to be extremely vigilant. Freddie would simply just step into the road (as he did at the weekend, just started running and frightened me half to death) no danger awareness or comprehension of road safety. So, as long as we stay safe with him and we don’t push him too far, we encourage this physical independence as much as we possibly can.

Never give up on your hopes for your children. We firmly believe Freddie can achieve anything and reach his potential with the right determination, love and support. He amazes us each and every day.