Dear @Ellie56,
I apologise for not getting back to you sooner, I dont get a notification on my post and as it had gone quite for a few days I assumed it was 'gone' and forgot to check.
Thank you so much for your post, what a journey you have been through.
You brought tears to my eyes with your invisible brick metaphor as I do feel similar with my little boy at times. I am so pleased to hear yours is now thriving and happy.
The most overwhelming part about all this for me as how varied these conditions are and how there seem to be no telling how they will evolve.
We have been referred to Early years planning and review meeting and he has had a block of speech therapy and is due another one in the new year. He has 1.1 time once a week with the pre school manager for 30 mins and she has assured me he would get support at school from the TA and the teacher.
How does one get support from the EHCP? I recently filled in his school application and ticked the special needs box (as suggested by the pre school manager), will that start the process?
I have called numerous private Speech therapist and asked their advice and they all seem to say that the block offered by the NHS would be sufficient. That the real work is at home. Talking to him, repeating helping string sentences, playing games, supporting him when he cant remember things, encouraging him, building his confidence, little tv and Ipad time etc and that all this would be sufficient until his next block of ST. A block by the way is 30 mins, once a week, for 5 weeks.
So Ive been doing that. And where he had developed nervous ticks such as tapping his head and saying ' Come on think think think' when he couldn't find an answer or a word quick enough, he has completely stopped doing that. His tantrums are fewer and he seems happy as ever, but I dont know if Im doing enough.
I have noticed now that he struggles with the concept of time. 1 second and 1 week is not different to him. Other little things like that have started to appear but at the same time he is still so little ( he turn 4 this month) I dont know what is a sign of 'problems' to come and what is a sign of just being little and needing a little extra time to grasp concepts. Its very hard not to scrutinise everything.
When he wants to say something he can say it. For example, Im cold, Im tired, I dont like this game and X is annoying me. But also sometimes he will also just say things for the sake of it and babble. If asked how was your day he will just invent, and list the things around him ' babble babble, the car, babble the sky and a dog outside babble, preschool day and babble' it makes no sense.
He is eager to learn has a good concentration and is a wonderful boy to be around, I just dont know where all this is going to go, if Im doing enough, if all the support that is in place is enough.
I cant imagine how proud you must have been during that Christmas play after years of struggling to communicate, you must have been overwhelmed with happiness.
Thank you for sharing your story.
If anyone else has any insight on this condition or can suggest anything else I could do to help I would be most grateful.
Thank you