A year ago today I started writing this blog. I didn’t really know much about blogging back then and the idea of writing all my feelings down for the world to read seemed a bit daunting. But after doing a few posts I really started to enjoy it. It was initially a place for me too offload a bit, somewhere to write down some of my feelings and let off some steam. I think now it’s become more of a little diary for me. A place to write about how appointments are going and what we have been up to. I have always hoped that someone in my situation may have read my blog and took some comfort in knowing they are not alone.
This time last year Freddie was 17 months and life was pretty hard going. We were drowning in appointments and it just felt like a never ending battle. Freddie had started to sit up & was batting at toys. He was eating small amounts of pureed food but we were still relying heavily on his gastrostomy feeding tube. He had start to wiggle across the room on his back a little bit but there was no babbling from him or attempts to crawl or walk. I think back then I was still convinced Freddie would catch up and he wouldn’t go on to be a disabled child. We had been told he had severe delays but I still held out alot of hope that everything would go on to be ok.
A year later and Freddie is 29 months old, We are still drowning in appointments, 1 a week is a minimum, we seem to be on more like 4/5 a week at the minute. Freddies sitting has improved, hes still wobbly and falls over & sits in a very bad position for his spine but there is some improvement. Hes still eating small amounts of pureed food, we have tried to move onto more solid foods but they seem to make him retch. I have been trying to encourage Freddie to take small amounts of water from a beaker so we don’t have to rely on the mickey button so much but he really struggles with swallowing it. Freddie still isn’t babbling but i do think there has been some improvement on his understanding of what i’m saying to him and he has learnt to wave and to clap his hands! Freddie still isn’t crawling or walking and we are having big problems with his sleep. He has little interest in playing with toys, possibly as his hands don’t work as they should but his Ipad will keep him entertained all day, it’s just taking it off him that’s the problem! Freddie takes 9 doses of medication throughout the day via his mickey button and is pump fed milk in the night to make sure he gets enough calories to grow.
There have definitely been some improvement with Freddie’s development, it very slow progress, but any progress is great. I think now I have accepted more that Freddie won’t catch up. That he will need round the clock care for his whole life. It’s a hard thing to accept but i think by accepting it it’s allowed me to change my views and become more positive. I no longer look at other children like Freddie and feel sadness that Freddie isn’t like that(well, maybe i do sometimes! But alot less frequently) I have learnt to embrace Freddie for who he is. I don’t want people to look at him and pity him for being unable to walk or talk, I want people to look at him and smile and see how fantastic he is. He has me laughing daily at how quirky he is…the boy who retches at the sight of foods yet will happily suck on my toe!
Freddies undiagnosed genetic syndrome leaves us with so many unanswered questions over the future. We have no idea if Freddie will live to be 5 years old or 100 years old. What we do know is that the associated health problems that come with these disorders are the biggest cause of death of children aged 14 years and under. Only last week a child who was part of the swan uk(syndromes without a name) group sadly passed away. It was a real shock to everyone in the group and made life with an undiagnosed child seem little more scary.
In my opinion life is far too precious to waste it wishing Freddie was someone else. Freddie may eventually go on too walk and talk or he may not but either way we will appreciate every single day we get to spent with him.
I’m not sure what the next year will bring for us, we are looking at the possibly of another operation in the very near future, talks about overnight oxygen(hopefully it won’t be required) and Freddie should be starting in some sort of nursery/school setting.
This blog is dedicated to Beatrice, RIP little one xx
For the past 3 weeks I have been taking Freddie to our local children’s centre to meet with the child development team for assessment play sessions.
The first session I found quite overwhelming. I was told there would be 3/4 other children in the room with Freddie with similar levels of physical & communication development. When we entered the room I immediately noticed that the other 3 children could all walk & were far more advanced with communication than Freddie. It was quite a shock as Freddie was very obviously different. The odd one out.
The room was full of all different types of specialists. Speech & language, Occupational therapist, physiotherapist & play specialists. I handed Freddie over to them & was taken to an observation room. In the room there was big window where I could watch what Freddie was doing without him being able to see me. The 1st session I spent most of the time in the observation room talking to a lady from the child development team about Freddies school provisions and the second session filling out forms so I never got to watch Freddie much.
The last session was a bit different. I got to spend the whole session just watching Freddie. It was quite a surreal experience. It was like I wasn’t seeing Freddie as I normally do, it was as if I was looking through somebody elses eyes. I saw this poor little boy struggling to do anything, in his own little world. He looked so vulnerable strapped into his chair.
There was another parent in the room with me at the same time & he said to me “So is your son disabled? What’s actually wrong with him?” Other parents of disabled children may know how gut wrenching questions like these are. It’s not that I don’t want to discuss Freddie, it’s just that the fact these questions are being asked must mean that Freddie obviously has problems. I was never really aware of how other people view Freddie. But from watching him through the observation window & speaking to this other parent it’s made me more aware of how other people see Freddie. It saddens me to think that when other people see Freddie they see a disabled child. Theres so much more to him than that. He has a very quirky personality & makes me laugh often.
There was one point that made me understand why this parent was asking me such questions. All the other children went outside to play and Freddie stayed in his chair & was surrounded by 6 different specialists. They would look at Freddie & touch different parts of him & then chat about him & there was lots of head nodding. I tried to lip read & work out what they were discussing, I know at one point they were discussing the concerns over his left leg & him not using his left arm properly.
When they were finished they popped on his new specialist orthopaedic boots that his physio had bought along from him. His physio then held him under his arms & stood him up while another physio moved his legs & to try and get him to walk outside. There are not many times were I feel pity for my son but that moment I really did. If it wasn’t for the fact Evie was with me looking through the observation window i’m sure I would of cried, cried at seeing my son so vulnerable. It made me understand alot more how other people must view Freddie. His quirky & funny personality doesn’t shine though until you spend some time with him & get to know him. I’ve had many looks off strangers when i’m pushing Freddie in his chair, looks of pity & now I can understand why.
The last part of the session they sat the children down for snack time. I had discussed with one of the specialists that Freddie is showing a very big aversion to solid foods. They make him retch & he refuses them in his mouth. I also warned that sometimes the retching will result in him being sick. As expected when they offered him a slice of apple his refused, they attempted several times to touch it against his lips but with no success. Hopefully now the aversion to food has been noted by the child development team we can get some help with it.
Through all 3 sessions there has been lots of notes taken by the various specialists & we are due to go back to the childrens centre on 18th October to get our results of the assessment. I’m very apprehensive about going to speak over the results. They are going to be very important in helping get Freddie the right level of support when he starts school but i’m sure it won’t be an easy conversation to have.
What do you see?
What do you see when you look at me?
Do you just see a disability?
If you look beyond that then you will see
Theres lot’s of other things about me
I like to be tickled, it makes me laugh
And I really like to splash in my bath
I’m funny and cheeky and have a great big smile
But sometimes it just takes a while
To see that there’s more to me
Than just my disability