On a journey with my child that has a rare neurological autosomal genetic disorder called SYNGAP.
Friday, May 13, 2016
My Special Boy: I Can Change The World!
My Special Boy: I Can Change The World!: It's been quite a while since I have posted an update on Beckett. Since the start of the new year we have been full speed ahead. Becke...
I Can Change The World!
It's been quite a while since I have posted an update on Beckett. Since the start of the new year we have been full speed ahead. Beckett has started a new medication which in addition to his Lamictal has helped him control his meltdowns and sensory overload. He has been on Clonodine for the last 6 months. It has been a life changer for us. His meltdowns are minimal and his cognition has improved over time. We still have the occasional tantrum, which is expected. But this is nothing like from years before. The hours of screaming are gone and it is much easier to redirect his behavior. He is now at a daycare where the children and workers love on him. I see him truly happy and there has not been an issue with him at his new after school care. The foundation is taking off. We are full speed ahead and are focusing on building our programs and planning a long lasting strategy that will sustain our mission. My new motto has become #NEVERSTOPPING.. because until I am 6 feet under I am never stopping. My hope grows stronger for these children every day. The great scientists and clinicians who are walking by our side all the way are going to help us get there. There is so much to say and do.. but to keep this short there is one picture that says a thousand words. A picture that my Beckett brought home form school said it all.......
He has changed my world.......
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