An amazing Richie update!

After so many months of struggle there appears to be a light at the end of the tunnel and not only that something incredible is beginning to emerge ! 

For many months we have been struggling with some pretty severe behaviors that could have led to brain damage or  blindness (that is a constant reality for us )  to say the least which led to His I.E.P not being signed, an emergency meeting and an unreal amount of worry and stress that I could never put into words ....

Our experience with the May has been so Incredible (our decision to send him there was a parenting win for sure ) Our school district without knowing any of the story or taking the time to  (his med changes , not considering hes now going through puberty, expecting him to be doing god knows what it 9 months and clearlythinking he has no feelings and deciding for him how he should think and feel , how long he gets to adjust being away from his family not considering the trauma , a lawyer comparing him to other children) anyway they pretty much came in and bashed the May...... (those reasons are for another blog! ) It's all about the $$$ sadly 

The good news !!!!! Richie's behaviors all across the board have significantly decreased to the point of them giving him new goals! (although his bolting seems to be increased lol) but that's normal to go up and down .. However I'm cautiously optimistic ... 

Richie has been on a 16 week med change for his seizure medicine . he was for years taking kepra (which can be known to cause some very bad behaviors) at the time it was all that could stop his seizures (which were very very scary) He is now on another medication but that had to be very slowly introduced before they could begin bringing his kepra dosage down . Since the Kepra dosage has been slowly decreasing not only have Richie's SIB behaviors significantly decrease but he is so much more alert and his communication skills have been amazing ! when we were with him on Saturday he actually walked up to me tapped me , looked me in the eye and signed eat!  It is impossible of course to describe how amazing that is ! It will take another 8 weeks or so to really see but wow ! 

One of the hardest struggles for me as mom has been knowing Richie understands everything just like you and I and can't let his needs be known for all of these years , It so heartbreaking to watch a child who once had a full vocabulary that he lost not be able to communicate to let us know what he needs , even if it's just for a hug .(imagine how that feels to him every single day!) We could never really know what happens in school (especially in the past ) if someone says something about him and in front of him , There was a long time he was in a situation in which everyone sat an IEP meeting listened to a school psychologist say its not worth the resources to give him speech etc because of his condition and it won't do him good anyway . (yes those were the exact words we had to sit and hear and no one said a thing letting that happen ... that's when the longest struggles of our lives began ... It's one thing to loose a child to an illness and have to deal with great loss and then the very people who are supposed to help just wanted to throw him away ... It's unimaginable that this was even possible .... Sadly I know our story is not unique ....

But now we have so much to look forward to with him in a school that believes in him 100% and loves him ... where they know exactly what he needs and are so very proud of him .... I'm feeling so excited for the future and soooo grateful and proud he is beginning to finally be able to communicate in his very own way! 

Maria 

xoxoxoxoxxoox