We are lucky in that Nate has a lot of input from our local authority (at this stage).
He attends a weekly physio group and gets home physio and hydrotherapy once a fortnight. He also goes to a sensory visual impairment group run by the VI team, and then a sensory group and development group run by portage. I have many criticisms of our local authority but group wise they are fabulous.
Nate loves his groups ( though we best not mention his sleeping through hydrotherapy today) and meeting other parents is a lifeline.
All these groups and input seem to be finally helping his development (combined with his flash super hero style orthotic suit not funded by LA)
While Nate has always smiled and laughed through his groups he has not really been able to join in. The first group we attended, in the beginning, was actually a total nightmare- I struggled to hold this extremely floppy oxygen dependent little boy so he could see what was going on around him. It was upsetting and hard but we carried on going just to get out of the house.
Gradually we began to access other groups too through Physio and portage. I became less worried about holding Nate, admitted my difficulty holding him, bean bags were offered and things became easier. Recently nates tone improved to a point where holding him wasn't so much of an issue :)
But now, suddenly, he's made a little jump in development. Last week when singing the welcome song he hit his chest in time to "here I am here I am" , he can now reach, pick up, and shake a small rattly instrument, and bangs a tambourine with delight.. Hard! He's also started to play with purpose and has demonstrated he understands cause and effect so the plan is to introduce switches to song time in the groups we attend to help communication!
We had a child development team meeting last week and they asked me how I felt things were going. I replied "really well actually". They looked surprised. But he IS doing well, relative to how he was, and what they thought about him. I don't expect him to wake up one morning and be "normal" I don't have any expectations.
So "every little things he does is magic". Well, to us it is.
Fantastic! I really understand how you feel as we have experienced these 'little magical moments' with Jess and now she is doing things that we were told may never be possible. Jess really benefitted from her Portage and Physio and through them we attended a group at our SEN Nursery where she came on in leaps and bounds. Keep it up Nate- well done ! xx
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