I meant to update this blog before, but last week was quite stressful for our family, with K coming home, having dramatically changed her looks, and T-man having issues with it, and many meltdowns. Thanksgiving dinner was small and great, our cousin's daughter played with T and tried and tried to get him to talk to her most of the time. She is six and neurotypical.
Even though I've progressed over the years, autism still gives me a hard time with life. I have difficulties speaking, most of the time have no clue how to socially interact appropriately, and have many sensory issues. Academics didn't give me any issues until recent years, I have slight learning difficulties with story problems, applications of math, and abstract ideas. All of this is still better than the three year old who said nothing and understood nothing, and the six year old who didn't have any functional speech. It's been a long road, but it is even longer ahead of me. I'd like to teach special education some day.
T is just five, so a lot of his issues remain. He has only spoken a few times, and only since this spring. He is VERY bright and races through academics, he is on about a second grade level right now. He can read and write, and can communicate better this way. He is in special ed kindergarten. Yesterday, he spoke for the first time at school. He was finished with his work and wanted something to do, so he went up to an aide and said "book". We are so proud of our little T-man!
Mum is feeling better than she has in years, currently. We are very grateful for that, and that T and I are progressing, and for life.
Monday, November 23, 2009
Sunday, November 22, 2009
Who we are
Although about a family, I'll be the only writing this blog. I am Rachela, one of three kids in this family. I am 17 and diagnosed with pervasive developmental delay- not otherwise specified, or PDD-NOS, an autism spectrum disorder. But is that who I am? Maybe those are my thoughts.. how do you define who anyone is, anyway? So I'll stick with the basics.
Mom has a kidney disease called FSGS, or focal segmental glomerulosclerosis. I still can't pronounce it. It is an autoimmune disease that attacks the filters of the kidney, or glomeruli. About 20,000 people in the US are in end stage renal disease, or kidney failure, because of FSGS. Tens of thousands more are living with it. Every year 5,400 people are diagnosed with FSGS. It has no FDA approved treatments or cure. Most patients are treated with steroids. I think that most, if not all, patients with FSGS will reach ESRD. Mom has been diagnosed with it for over seven years now. In October 2009 she had her first kidney transplant, donated from my dad, but the new kidney already is affected by FSGS. She teaches special education.
Dad has Asperger's Syndrome, a high functioning form of autism, and sleep apnea. He works in a grocery.
K is my older sister. She has attention deficit hyperactivity disorder, or ADHD. She is 20 and is in college as a chemistry major.
T is my younger brother. He also has PDD-NOS. He is 5 and attends kindergarten in a special education classroom.
That is our family, three of us with ASD, one with ADHD, and one neurotypical but not typical in all senses. All of us have alphabet disorders, hence the name of this blog. The other posts will be more interesting, once we get past all of the introductions.
Mom has a kidney disease called FSGS, or focal segmental glomerulosclerosis. I still can't pronounce it. It is an autoimmune disease that attacks the filters of the kidney, or glomeruli. About 20,000 people in the US are in end stage renal disease, or kidney failure, because of FSGS. Tens of thousands more are living with it. Every year 5,400 people are diagnosed with FSGS. It has no FDA approved treatments or cure. Most patients are treated with steroids. I think that most, if not all, patients with FSGS will reach ESRD. Mom has been diagnosed with it for over seven years now. In October 2009 she had her first kidney transplant, donated from my dad, but the new kidney already is affected by FSGS. She teaches special education.
Dad has Asperger's Syndrome, a high functioning form of autism, and sleep apnea. He works in a grocery.
K is my older sister. She has attention deficit hyperactivity disorder, or ADHD. She is 20 and is in college as a chemistry major.
T is my younger brother. He also has PDD-NOS. He is 5 and attends kindergarten in a special education classroom.
That is our family, three of us with ASD, one with ADHD, and one neurotypical but not typical in all senses. All of us have alphabet disorders, hence the name of this blog. The other posts will be more interesting, once we get past all of the introductions.
Subscribe to:
Posts (Atom)