Ok - so this is our first post. My goal for this blog is for families and individuals living with Asperger's to come here to share their ideas, successes, questions and frustrations with the rest of us. We're a community different from other communities, because we're on the front lines fighting individual battles to find resources, support and methods of living with Asperger's that will provide quality of life, happiness and success. Our children and family members are usually high functioning, intelligent indviduals, so resources are often limited. Misdiagnosis is common, therefore treatment is spotty and inconsistent - creating more frustration and anxiety for the individual living with ASD - not to mention the distress caused to parents and families who feel like failures at every turn.
There are so many issues that we can discuss - to name just a few:
- education
- sleep issues
- social akwardness
- tantrums
- sensory integration disorder
- family and group participation
Okay - this list could go on for a while, but you get the picture. I hope that we can share stories, practical solutions, successes and frustrations so that we can help and learn from each other. In addition, I'll be posting my daily successes and setbacks with my daughter. And most of all, I want us all to recognize the beauty and freedom that comes with ASD. My daughter views her life through her own lense and she teaches me everyday that though life is hard and confusing - DIFFERENT IS BEAUTIFUL!!
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Thank you Cindi for starting this blog and sharing your story! I look forward to seeing and reading more!
ReplyDeleteThanks, Beatris - please let me know how things are going for you and your son and let me know if I can be of any help.
ReplyDeleteI will keep you posted! It is amazing how much of what you went through I went through with my younger son Max! But I was on top it being his biggest advocate because I was afraid the teachers would call his issues Behavioral instead of what it really was which was Sensory Integration! I caught it when he was 18 months old going to speech therapy. But through Occupational Therapy, verbal cues, and speech therapy it became more manageable. I went through those tantrums too where he would just scream triggered by not being able to put change in the bus, or not being able to press a street light, or watch me pour juice. Nobody at the time understood what I was going through, this was 6 and 1/2 hours ago. (I went to work at his school when he started K0 he was 3 years old but I wanted teachers to know he couldn't help some of his behaviors!) He did grow out of most it but he was a strong willed child just like your daughter! My son would also sleep walk and still does ccasionally! But Max is a well adjusted 8 year old who is gifted in Math, Logical Reasoning, and Reading. I just didn't catch it with Jules and a lot of denial!! I won't apologize today;) But the guilt I have because I was able to help one child but not the other! But I am trying. By the way Cindi Jules wouldn't meet with me to see a therapist. But he did accept my invite to lunch on Friday;)!!
ReplyDeleteGood news on your lunch date with Jules. One
ReplyDeletesuggestion, which worked for me - don't push - build trust first and then work suggestions into conversation later. I realized that my daughter didn't trust me because she thought I wasn't hearing her - listening to her and making her realize that she has a voice worked wonders for us. Now she trusts me completely and although she's young, we discuss all of her treatment options and I explain everything to her when necessary.
I know how you feel when you feel guilt about helping one child and not the other - my oldest daughter shows signs of Asperger's (which is hereditary). When she was young I had her tested for dyslexia - no one was talking about autism and certainly not Asperger's at the time. She's grown and has her own family now, but has benefitted from the things from my younger daughter's diagnosis.
Keep me posted and remember I'm pulling for you!!