Pray for Robbie

ROBBIE WAS FOUND ALIVE FRIDAY AFTERNOON!! AFTER 6 DAYS, LITTLE ROBBIE WAS FOUND IN A QUARRY, CURLED IN THE FETAL POSITION, COLD AND DEHYDRATED, BUT ALIVE AND ALERT!!! HE WAS IMMEDIATELY AIRLIFTED TO THE HOSPITAL WHERE HE WAS REUNITED WITH HIS FAMILY!!

Robbie Wood is 9 years old and has a severe form of autism. He can't speak, and he likes to run and hide from his caregivers. Last Sunday afternoon the unspeakable happened. While on an outing with his father, his father's girlfriend, and his brother (who also happens to have autism), Robbie darted away. The outing was in a civil war battlefield park, a park that is 80 acres in size, and surrounded by a thousand more acres of dense forest, cliffs and a river.



As of the time this blog was written (Wednesday afternoon), Robbie still had not been found. County police, state police, professional search and rescue organizations and 1000's of volunteers have been combing the vast area looking for Robbie. Robbie was dressed only in a long sleeve teeshirt and athletic pants - clothes not warm enough for our 40 degree nights. And, he hasn't had any food or water since Sunday afternoon.

Everytime I think of what Robbie is going through, as well as what his parents, other relatives and friends are going through, tears flood my eyes. Each passing hour makes keeping grim thoughts out of hopeful hearts harder and harder. There have been vigils and prayer circles and volunteers who vow never to stop looking for Robbie until they find him and bring him home. But there have also been people who offer negative comments about Robbie's parents.

Comments like, "How can a father just let a son wander off?" and "What is wrong with these parents?" and "Robbie has scratches and bruises on his face in that picture? Did the parents do that to him?". And that's the milder of the negative comments and questions.

I know what it is like to raise a child with significant special needs. I understand the running and hiding. I have experienced first hand the self-injurious behaviors that to an untrained eye would point to a parent or caregiver. But the police have given absolutely no, as in a big fat NO, indication that this is anything other than Robbie has run away.

Why do people who have no clue about parenting a child with autism feel the need to ask questions and make comments that do nothing but hurt the family more? Honestly, it really, really pisses me off...

Please keep Robbie and his family in your prayers.

Phillips or Flat Head?

I’ve written many times before about my worries for my children with significant disabiltiies as they move to adulthood. It seems that each year older that I get, the more I worry. Go figure!

The school system, with enough prodding, will do a passable job of preparing children with significant disabilities for the workforce. I’m not sure they do enough, but I believe there is only so far they can be pushed (the school system, not my children). The school system also concentrates a lot on things they label ‘life skills’. That usually means cooking and cleaning up but not much more.

A lot of the preparation for true life skills comes from parents. And with my children, I have concentrated on some of the more common skills – being able to do laundry, make a bed, set a table, run the vacuum. But there are so many other things – absolutely critical things, in my opinion – that we often forget. So here is the start of my list of those other things, and I would like to know if you have things that should be added to the list.



I want my children to:

• Know how to use a plunger to unstop a toilet


• Know that if the water to the house if unavailable (which has happened to us during hurricanes), a toilet can be flushed by dumping a bucket of water into the toilet bowl


• Be able to flip a blown circuit breaker and maybe even replace a fuse


• Know how to make a good friend and how to keep that friend


• Know how to be a good host or hostess when people visit


• Understand what a plumber does, what an electrician does, and what a handyman does


• Know how to hang wet laundry to dry (in case the dryer breaks), hang a picture, and hang up clothes


• Understand how to kill a bug rather than drowning it in pesticide


• Know the purpose of a door’s peephole and how to work the home alarm system


• Know how and how often to change the batteries in smoke detectors and carbon monoxide detectors


• Know how to sign for a package


• Know how to locate a pharmacy, drop off a prescription, and then pick up and pay for that prescription


• Know how to use bleach appropriately and know which cleaning solutions to never ever mix


• Understand when and how to use a PERS (Personal Emergency Response System)


• Know what to do if they are in a car accident or witness a car accident


• Know how, when and who to ask for help


• Understand how to dress and act in a courtroom, at the theatre, and in church


• Know that they can challenge what a doctor, nurse or other healthcare provider tells them


• Know how to plant flowers and a vegetable garden, and then how to harvest those things


• Know how to paint a picture, a wall and their nails


• Know what to do if they get a small cut or scrape


• Know what things they want in a lifetime spouse or partner, or even a roommate


• Understand that having a pet requires attention and responsibility on a daily basis


• Know how to use a screwdriver and the difference between the types of screwdrivers

OK, I’ll stop there for now. Please add as you see fit!

Dreading The Next - Revisited

I wrote a post last week titled "Dreading the Next." This past Saturday, an article and a video appeared in the New York Times titled "Autistic and Seeking a Place in an Adult World."



Though their disabilities are different, Justin, the subject of the NYT article, and Ashley face similar challenges in the future. And like Justin's parents, my struggles in helping to facilitate a good future for Ashley at times seem overwhelming.

This article does an excellent job of relating those challenges and struggles. It's a long article, very long, but worth every second of your time to read. There is also a video which shares a lot of Justin's story, but not as much as the article itself.

If you are the parent of a soon-to-be-adult with significant disabilities, I don't think you will regret taking some time to read Justin's story....

Autistic and Seeking a Place...

(article and picture courtesy of the New York Times)

Dreading The Next

I think I’ve lived in a state of denial the past couple of years when it comes to thinking about Ashley’s post-school life. She is 16 and we do have some time, just a little time, to figure things out, but I am at the point of worrying now.

Research shows that employment for people who are deafblind and multiply disabled is not good. That same research shows most of those people end up just living at home or in a *facility*, unable to find work.

I hope to be around for a while yet, but I do still worry, and worry seems like too mild a word for my emotions on this subject, about what will happen with Ashley when I am no longer around. I don’t believe she will ever be able to live independently, and even if she could acquire those skills, would she be able to find a job to support herself? And, with my experience with *facilities*, I don’t believe there would be anything worse that could happen to her.

The school system is not doing a very good job of preparing Ashley for life after school. Yes, we have functional goals in her IEP, but the school’s investment ends when Ashley leaves school, and sometimes even sooner. There is a one size fits all mentality in the school when working on job skills. “let’s all go wipe down the table in the cafeteria” for example. I have yet to see a real interest in discovering what Ashley prefers to do, what tasks interest her, and what tasks drive her crazy. If her preferences are not factored into the training, it seems to me to be a total waste of time.

In Virginia, we do have a rehab services agency that purports to serve people with disabilities who want to find a job, and training for a job. That agency won’t become involved until the last year of school for the student, and at present, have shut their doors to all because they say they are out of money. It’s too late to wait until the last year of school. And my experience with this particular agency is that they will work with the more mild disabilities, but send them someone with multiple, less common disabilities and they throw up their hands.

So, any of you in a similar situation as mine, what have you done or what are you planning to do for the post-school years for your child with multiple or less common disabilities? Is your child going to stay in school for as long as possible? Have you found private agencies that serve adults with disabilities to be more proactive than government-run agencies? And, at what age did you start working on a plan for your child?

Are you as worried as I am?