Webster's Dictionary defines the word advocate as "a person who speaks or writes in support of another. To champion, support, encourage, advance, promote, recommend, approve, and endorse."
We are our children's only full time advocate. Our kids need us to learn as much about their disorders as we can. They need us to understand what they are going through, every day. They need us to feel how frightening and chaotic their world can be. Above all else, they need us to be their advocates. (form the SPD website)
When we figured out what was wrong with Aleq it was hard to tell people because they would just look at me and say "there is nothing wrong with him", "you are making excuses for him". I have heard it from friends and family.
Why are you babying him?Here is a website http://www.sensory-processing-disorder.com/ , that has helped me so much.
I feel I am the only one that understands him and trying to help him. I feel I am his only advocate!
Being with him at therapy, I have seen the issues. Being with him everyday I have dealt with the issues.
How can I get people to understand that it is not a quick fix? How can you explain to other kids, they are kids themselves and do not understand the magnitude and take what he does personally. It is hard.
I work with him everyday. I have a hard time with him wanting to do things because of his self esteem. Today we did not do any therapy. I did finally finish the Out of Sync Child Has Fun , highlighted all the things we can do. Just need to get supplies and I hope it helps. I think the biggest challenge is to get him in a positive mood.
If he doesn't feel included he feels everyone "hates" him. Therefore he lashes out. It was hard to watch because I dont' think even they understand the magnitude of how important it is to make him feel he is wanted. I need people around him that want to be around him not people that just have nothing else to do.
Tomorrow will be a great challenge, we will have park day. I pray that it will go well.
I tell myself this is a journey....we will make it because I am his advocate.
I saw your post on a yahoo group, which led me to your blog, which led me to this post. As a fellow SPD mom, I am so impressed with your candor and will. Yo go, Mom! Also, I wanted to let you know about something I just got connected with. Sensational Homeschooling - a sister site to the successful site Our Journey through autism. Tiffani, who started both sites, is hoping to make the SH one a team effort of moms., professionals, advocated, etc, of SPD kids that contribute time, writing talents and whatnot to help lots of folks in our positions. I think Tiffani is great and the site is something I believe in, so I am helping. It would be awesome, i think, if you'd help, too. Your take as an advocate Mom who is creating her own OT would inspire many, I think. Anyway, if you're interested, see http://www.sensationalhomeschooling.com/2010/05/seeking-contributors.html about writing and http://www.ourjourneythruautism.com/2010/05/ojta-seeks-volunteersat-ojta-and.html about volunteering. Or, if you just wanted to write a guest post, that could work, too. or, if you're not interested at all, no worries. Just wanted to reach out, give you kudos and invite you in case you are. Blessings!
ReplyDeleteThank you so much for your support and kind words. I would love to help others. I will go to the website and let them know.
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