Tag: siblings

Why We Went On To Have Two More Children After Having A Child With Special Needs

A friend asked me this weekend why we decided to have three children? There was no sarcasm or malice in the question. Just simply wondering and genuinely interested. He knows that Freddie has Additional Needs and wondered how we cope?

Sometimes ignorance is bliss.

When we found out at my 20 week scan that Freddie’s brain wasn’t developing correctly and after all the scans and tests that followed until his pre-term birth, our focus was just getting him here safely. We had no diagnosis, didn’t have a clue what the future would hold and had never really thought about anything genetic. However, we had always wanted two children and I think that because we could ‘hide’ Freddie’s needs when he was a baby and pretend to ourselves that he was going to be ok, we decided to go for it pretty quickly. Living in denial was probably quite blissful at the time. I became pregnant with Bella when he was only nine months old. Perhaps if we had left it longer, we might have made different decisions? I don’t know. It was around this time that the hundreds of appointments and therapy sessions really kicked in. I was one exhausted pregnant lady. We got through it though and were so excited to have our beautiful little girl.

When Bella was around three months old, we were invited to attend genetics counselling. When I look back, we were so naive and innocent and actually right in the centre of total chaos. The Dr asked how our new baby was, did we think she was developing typically and did she have any dysmorphic features? Time just stood still. I can recall every prickle of fear as if I were in the room now. We honestly never considered for a moment that Freddie’s needs could be hereditary and we also didn’t know there was such as thing as De Novo Genetic changes that occur. No-one had ever spoken of this other than the more well known syndromes they tested for regularly. What a shock that was.

We went onto the DDD study and waited.

During this time, I never threw away any of their baby things. Hoarded everything. We were only having two so what was I thinking? I called the geneticist a number of times hoping the results would be round the corner. Nothing. Our main concern was finding an answer to enable us to give Bella all the information she would need for when her time comes to be a mum. If that is the path she chooses. We also wanted (and didn’t want) to know if Freddie’s condition was life limiting.

As Bella was approaching 18 moths, I realised she needed back up. I don’t have any brothers or sisters and as I’ve experienced more of life’s riches and heartbreaks, it would have been good to have that back up. So grateful I have Ollie.

We needed safety in numbers.

I didn’t  want Bella to feel pressure when she is older, perhaps when Ollie and I are no longer here. It’s tough managing these challenges alone.  Although risky, without a diagnosis, we weighed up all the options and all the solutions open to us. After a lot of discussion, we decided to go ahead and try for a third baby. Freddie’s rare diagnosis of TUBA 1A came after Jago was born.

I’m not really sure how Jago will take it if he realises he was back up? I’m hoping he will know he was born from a deep place of love for our whole family unit. He has made us complete and we adore every inch of him as we do Bella and Freddie. We are extremely lucky to have three children. I hope they remain close as they grow, lean into each other and realise they now have safety in numbers.

A Siblings Struggles

Sometimes siblings find home life a bit of challenge living with Special Needs. Bella certainly struggles at times and doesn’t always seem to know her role within the family. Freddie is older and yet ability wise he is so much younger so it can be confusing for her with a younger brother as well. She does act out at times at home (you can usually find me pulling my hair out drinking gin) and needs more mummy/daddy time but she is a brilliant, smart, funny and a loving daughter and sister. We had her report today from Pre-School and we were blown away. She has made so many friends, grown in confidence and ability and she is caring and fun. Reading all these wonderful things gives us some confidence that even though it can be tough at times for her, she is going to be ok and thrive. A true Wonder Woman. So proud of my beautiful Bella Boo. X

I am Bill Murray!

I admit it. I mostly hate bedtime. Not mine, I love my bedtime. Some days I just really hate the children’s bedtime. It truly is like doing an aerobic workout. It’s exhausting.

It’s not awful every night but tonight it was pretty bad. I know Freddie is really tired having started back at school but his behaviour as soon as it comes to getting upstairs is terrible. Flying solo makes it tougher.

I think his sensory processing is all out of kilter at the moment. I’m sure it’s worse when he is tired. He chose the shower this evening but started freaking out the minute the water was running. He started shouting and screaming as soon as he was under the shower head. To anyone walking by, it would have sounded like I was beating him. I wasn’t.

Getting him dressed, drying his hair, giving him his meds etc all sounded like a torture session.

The whole act of getting a quick shower, popping on PJ’s and cleaning teeth should have taken what, about 10 minutes, maybe fifteen? Forty minutes later, I’ve managed to get him in to bed. This is my equivalent of training for a marathon.


Thank goodness for Bella. She was a total star. She read to Jago and brushed her own hair and teeth whilst she waited for me. She can be a handful and strong willed at times Which will be a positive attribute in coming years) but tonight she really pulled out all the stops. I realised how grown up she is for a four year old. She got in the shower, requested Jago get in too, washed herself and her own hair and helped him too. What an amazing little person. Sometimes siblings have to grow up so much more quickly out of necessity. My little girl is becoming so independent in so many ways.

Although this time of night is often a time I dread, especially if I am without Ollie, the end result is always one of calm and love. Honestly, it takes forever to get all three of them down. Part of the reason though, is that on top of all of the above plus reading books, Ollie and I both lay on each of their beds individually for a cuddle. It is a few minutes to tell each one of them that I love them and to talk about anything special to them (positive or negative) from their day. We talk about how they are feeling, who they played with and what was the best bit of their day.


By this time, Freddie is usually calm and back to his happy, chilled, kind and loving self. I lay by his side and cuddle him. He tells me for the umpteenth time, who they picked up on the bus on the way to school, about the big blue car and having dinner in the dinner hall. We have a lot of repetition in our conversations. Sometimes it can feel like Groundhog Day but what I remind myself, is that Freddie wants to communicate verbally so much so we encourage it and try to expand upon it. Once upon a time, we didn’t know if he would ever have spoken language. Taking that little extra time with each of my children has really helped bond us together in what is a very chaotic household.

Calm is resumed. I can leave their room knowing that no matter what, they know I love them.

Phew, where is the Gin?

The only solution is Gin

The only solution is Gin. I’m going to have to break into a new bottle right this second.

50% of the time, getting all three to bed on my own is fine. Yes they all go bonkers and have a mad hour but it’s usually ok. Last night was one of those such nights. Tonight was the other 50%. The nightmare 50%. One wanted a bath and the other two wanted a shower. Thats fine because now that we have a new shower, it’s so much easier for me to wash Freddie this way, so this would be my preferred option anyway. The tiny one is in the bath, I’m cleaning Freddie’s teeth. I hear “Uh Oh” and the bath is now completely empty with one naked toddler sitting in it shouting ‘more more’. He isn’t happy when he has to get out. Ok, I think, no problem. The other two wanted a shower anyway. Whilst getting the tiny one dressed, in comes my girly, screaming as if she has lost a limb. Almost but not quite. Playing with Freddie (how many times have I said ‘DONT play with the doors) she is running away and Freddie goes to slam the door and traps her toe underneath it. To be fair, I would probably – ok definitely – have been screaming too if that was me. Skin peeling off, blood and tears everywhere.

Once she had calmed down, a normal breath rate had resumed and I had convinced her we didn’t need to dial 999, we talked about it. She was convinced Freddie had tried to rip her toe off on purpose. Mean time, the tiny one comes running out of Bella and Freddie’s room wearing a pair of Bella’s knickers over his nappy and vest. I wish I’d had a camera. Very difficult to have a serious conversation with one upset child whilst wanting to laugh at another. Multi tasking is the only way.

Trying to help a four year old understand why her older brother doesn’t always understand the implications of his actions is tricky. I’m really trying not to weigh her down with too much information about his learning disability but it is becoming more and more apparent these conversations need to happen. We really want her to just see him as her brother Freddie, not her brother Freddie who has special needs. However, helping her to understand why he needs more help than her in certain ways is hopefully a positive step forward. Little by little. At the end, she said to me ‘I guess it’s ok, his brain doesn’t work in the same way as mine does it?’ Broke my heart a little for a number of reasons but as least I knew she sort of got it. I told her that like all of us, me included, he was still learning and sometimes he finds it hard to understand and process things. I think she still thought maybe he did it on purpose mind you. She won’t know what has hit her when Jago really starts pushing the boundaries with her.

My poor neighbours. During the hour of 6pm-7pm they would have heard blood curdling screams, me shouting like a fish wife and general pandemonium.

I hope everyone’s bedtime hour went more smoothly than ours. Cheers. Bring on the double.