This week I heard words that, to be honest, I’d given up on waiting to hear long ago. Three little words that astounded me.
“Might catch up”
When Jacob stopped receiving play development therapy from portage we were referred to a local outreach service run by a charity called BIBIC, a charity that helps children with brain related conditions. We’ve just had our second visit from our lovely therapist, the previous one being around 6 months ago; session 1 involved lots of questions for me and a number of play based assessment activities for Jacob, in session 2 the therapist ran through her observations and findings and suggested a number of activities we can do daily with Jacob to help his sensory processing problems and move his development forward.
During the feedback the therapist showed me a list of all the things Jacob couldn’t do at the last visit that he could do now and showed me that Jacob had moved forward almost 4 months of development in the last 6 months! His fine and gross motor skills previously measured at around 15 months are now at 18/19 months level. Much as I know that he is progressing, I found proof of this large leap forward incredible. It was then that the therapist said the astounding words: “if he carries on like this, as the developmental milestones become smaller, he will gradually catch up”. I said “Do What? Sorry? He might catch up?” She smiled, nodded and stressed “He may do”. I know it’s a big might, and I am mostly reconciled to that that he is unlikely to ever really talk , but the fact that he is showing such progress in his motor skills is just so exciting regardless of whether this level of progress will continue or not.
This news has really motivated me to continue with the hard work. For the first two years of Jacob’s life I felt like I was knocking on a door only to see it open a tiny bit and then slam back in my face. It was relentlessly disheartening and so many times I felt like giving up. I felt as if all the work we put in was achieving nothing. It’s amazing to watch children without disabilities just do stuff, they just pick it up and off they go. Everything with Jacob has to be taught, over-learnt and taught again, hand over hand. It is unrelenting repetition and sometimes it feels if you are no further forward after months of work. Even with proof of fantastic progress, I would be lying if said I didn’t often feel resentful of the fact that so much of our life is dominated by carrying out Jacob’s therapy; but with news like this? Well, I just need a nightly big glug of wine and a vow to try again tomorrow. He’s trying so hard, so I can’t give up
I am so grateful that we’ve had this chance to work with a a charity that has let us see Jacob is moving forwards and that he is doing well in his own way. So it saddened me greatly to receive news that the BIBIC outreach programme is finishing due to lack of funding. This will be Jacob’s second and last visit and programme. We’re not giving up though, we’re off to find a new and exciting way to maximise his progress as he seems to be on a roll at the moment. More news of that anon……!
oneoffordinary 