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