I think these words that I read today in an article by Pamela Darr Wright, of Wrightslaw, hit home with me today. This is exactly what I find so frustrating about the experience of many families when dealing with special education. Public school districts are extremely hard to fight to get what children with disabilities need (and are supposedly entitled to under IDEA) – an appropriate education. But regardless of where the child is ultimately educated, it is impossible for the parents to bail out.

Schools... more

I must be an old timer, if the tune in my head today is Joni Mitchell’s Both Sides Now. But it’s the background music as I mull over the conversation I had with a friend at dinner last night. She’s a close friend, and she works as a special needs parapro at a local elementary school, doing an awesome job of handling some very challenging students.

She was telling me the story of a student who has returned to their classroom after moving for several months to another school district. The grapevine says that the other district kicked the child out for... more

“Wait and see,” the ______ said. (You can fill in the blank with teacher, doctor, therapist, adoption worker.) But regardless of who says it, it’s just plain wrong!

This point was driven home for me as I watched LuLu work through a computer-based program that tests her on some academic basics in math and language. LuLu is currently working slightly behind grade level in math, but further behind in language. In the last two years her language abilities, including speech, reading, auditory processing, etc., have been tested and retested. And regardless of who... more

Chediak-Higashi syndrome is a rare inherited genetic disorder that affects the immune system and many parts of the body. The disease damages the cells of the immune system, which leaves them unable effectively to fight off viruses and bacteria. Beginning with infancy or early childhood most people with Chediak-Higashi syndrome have repeated and persistent infections. Few people with this condition live to adulthood because the infections tend to be very serious or life-threatening. People with... more

Job syndrome is a relatively rare condition that affects the immune system and several other body systems. Those with this condition commonly struggle with recurrent infections. Job syndrome is characterized by frequent bouts of pneumonia, recurrent skin infections, and eczema. The skin infections cause rashes, blisters, abscesses, open sores, and scaling. Those affected also suffer from recurrent pus in the sinus, bone defects, and tooth defects which include fractures and late shedding of baby teeth. Job syndrome is also known as Hyperimmunoglobulin E... more

A fellow adoptive mom asked me this question this week. Her son has been diagnosed with ADHD, and has seen some improvements through medications and the removal of food coloring and casein from his diet. But she’s seeing signs that he’s struggling academically, and there are still many more “little” things going on.

Initially the professionals they were consulting dismissed the idea of the autism spectrum because her son has language, and very assertively uses it. She knows LuLu, and knows that we’ve had the diagnosis of PDD-NOS for several years. “He reminds... more

I’m following an online conversation among adoptive parents. It all started with the announcement that one mom has an acquaintance who is looking to “rehome” their newly adopted child. There has been a flood of opinion about adoptive parents who would decide that they can’t/won’t parent a child, presumably because of his/her challenges.

There are parents who are totally appalled that these parents would “give up” on the child so quickly. There are others who hop into the fray announcing that they themselves have either dissolved an adoption or given it... more

Meet Hannah. The picture in this online article is small, but Hannah’s face is blazoned on the top fold of the front page of the Atlanta Journal Constitution today with the headline “How Hannah Made History”. Hannah’s case is being dubbed the first autism-vaccine link case. What will happen next is anyone’s guess. I first blogged on the Federal court’s decision to pay Hannah’s parents out of the federal vaccine injury fund last week, having no idea that... more

Autism may be one of the hottest disability topics for this year’s presidential candidates. All the major candidates have addressed it in some way, which isn’t surprising, given the rapid rise in autism (1 in 150) and all those children with autism have parents and grandparents who are presumably voters.

A site called AutismFACTS has compiled information on the presidential candidates’ stance on autism and the government’s involvement. The information on this website is a bit dated, since most... more

The flip side of “where is my child going to live?” is “where will he work?”

Cary Griffin of Griffin-Hammis Associates dared us to get outside the box in thinking about this. Of course, focusing on developmental disabilities and those with severe mental disabilities, the traditional places of employment are sheltered workshops and specific jobs in the community, like janitorial work or bagging groceries. Those jobs have two basic problems. The first is that they are usually below poverty wages. The second is... more