Special Needs Adults are Not Trash

Warning:  this is a rant, and not my usual happy posting.  I was surfing the web this morning and I came across this article.   An Illinois woman drove her adult special needs daughter to another state, let her out at a bar. Then left her.  She left her and drove back home.

She. Left.  Her. 

The poor girl didn't have any ID, and she had a vocabulary of maybe 40 words. She didn't know her name or where she lived. 

Reading that story made me angry.  

I understand that it is a tough, thankless, never ending job to parent a child with special needs.  It is not easy being a parent of a 'normal' kid, but add special needs to the mix and the difficulty is often quadrupled. It is a battle.  It is definitely not a job for the weak or the faint of heart.   That your child is a special needs child, however, does not change the fact that you are a parent and that is your child.  You are responsible for that bundle of joy.  And make no mistake--no matter what, a child IS a bundle of joy.  Pure joyfulness.  Maybe not all the time, but that joy is there, if you are willing to look for it.  Every child, just like every adult,  has a right to be loved for who they are and cherished their entire life, not just when it is convenient or only when the child is behaving.   

I want to give this Illinois mother the benefit of the doubt.  I want to say that she had good intentions, and love for this daughter of hers, for at least 19 years.  But I don't know if that is true, because the facts don't support that.  Her mother didn't feel like caring for her any more, so she just dumped her.  Dumped her, like an evil, foul person abandons a dog on the side of the road. She dumped her without any identification in another state. If this mother didn't want to deal with her kid as an adult, she could have done it differently.

Every state has programs to help adults with special needs. There are group homes, there are advocates, there are work programs, etc., all created just for special needs adults.  The schools are responsible for beginning the conversation with parents about what needs to happen to make every special needs child as independent as they can be.  I know this because I give parents a packet of information at their IEP meeting that has names of agencies and phone numbers and whether there is a waiting list. We start giving these packets out at age 12.  My point is that the information, and the help, is there if you look for it. 

This woman, who was blessed with a child, dumped that gift like she was trash.  Right now I hate her a little for that.

Special Needs Parents: Morgan's Wonderland is for You!

I am a little obsessive about things being accessible. I can't help it. It's my belief that there is no good reason that places can't be accessible to everyone so that they can independently participate in life to the best of their ability. Unfortunately, lots of fun places for kids are not easily accessible for ALL kids. Which ticks me off; just because a person is in a wheelchair doesn't mean that they don't want to independently play and have fun and just BE. I understand that it is expensive to make doors wider and put handlebars on everything. Businesses are all about the bottom line, and no matter how wrong it is, that's just the way it is.

Here in San Antonio, however, is Morgan's Wonderland. This is, as far as I know, the only truly inclusive amusement park in the country. Gordon Hartman, whom I have never met but seems to be an awesome person, built this park in honor of his daughter Morgan.



I got a chance to explore the park before it was open, and I was blown away. And not just about this awesome sculpture in the front. As I walked around Morgan's Wonderland, all I could think about is how great this place would be for families who have members with special needs.

There are so many things that people without handicaps take for granted. How many people who are wheelchair-bound get to ride a carousel, for instance? Wheelchairs are often bulky and difficult to maneuver for most people. Even if they have a desire to ride on the merry-go-round, there may not be a way for them to get ON the ride independently. This place has a carousel that is accessible to all. An entire family can ride this together.

Morgan's Wonderland has swings for all sorts of sizes and disabilities. They have a Sensory Village, and a lake where kids can shoot a water cannon. There's several playgrounds that are accessible to all; siblings can play together. There is a train that goes around the lake, which I know my son would absolutely love. I did not get to see everything, but what I did see I loved.

Why am I talking about this? How many families with children who have special needs get to go on vacations? How many of those vacations are limited by activities which are not accessible by the entire family? Usually someone has to stay with one child while the other child gets to ride the rides. Wouldn't it be nice to go somewhere that everyone could stay together for the entire day if they wanted?

This is a place that offers that opportunity. Come visit!

Soapbox: Talk to Your Kids About Transition

The other night I was watching my son sleeping. His eyelids were fluttering a bit, and I thought that he was probably dreaming. He looked so peaceful, like all sleeping children do. There's nothing more relaxing than watching a healthy, sleeping child. Yep.

That's when the thought came to me: Zane will be driving in thirteen more years. Holy Crap! And then I wasn't so relaxed anymore. But it does illustrate that parents need to think about the future for their kids NOW.

What I am referring to is more than the standard, "What do you want to be when you grow up?" talk. There's so more to this than that. We all want our children to have dreams, and most of us want those dreams to have some fulfillment. But those dreams need to have a foundation of realism to them.

For example, let's go back to the "What do you want to be when you grow up?" question. I have lost count of the number of teenagers who tell me that they are going to play for the NBA/NFL/ETC. Parents need to steer their kids toward more realistic expectations for their career choices. Teach your kids to give themselves options. A Plan B, or Plan C, etc. And this is just the tip of the iceberg.

Does your child want to go to college? How do they intend to pay for it? Do they have the grades to earn the scholarships? There was never a time in my life that I did not intend to go to college. It was just assumed that I would. But my parents didn't talk to me about paying for school until they told me that they were going to pay for it. Up until that point, I just figured I was going to get by on my good looks. (I was kind of cute back then--and naive!)

Does your child understand the concept of budgeting? Do they understand that the paychecks that come into the house pay for 'invisible' things such as electricity, internet access, or garbage pickup? Do you talk about mortgage payments? Right now, we tell Zane that we have to work to pay for his "presents" at Christmas. When he's older, we will discuss how the money comes in and where the money goes, so he has a realistic concept of what he will need to live as an adult.

Does your child want to drive a car? How are they going to pay for a car, if you don't have one to give them? Who will pay for the insurance? Who will pay for the gas? Are you freaking out yet? Take a deep breath.

I work with special needs children. Some of these kids are going to need a lot of help to be successful. That need for help isn't going to cease once they hit 18. Is this child going to be able to make decisions for themselves once they hit 18 and are considered an adult? Is this child going to live in a group home? Is this child going to be able to get a job? Is this child going to be able to drive? If not, how is this child going to get from their house to their job? Is this child able to take care of their medical needs? What is going to happen to this child if their parents or siblings are not around anymore?

These are scary questions for some people to think about, but they NEED to be thought about, and talked about, throughout your child's life. In the world of Special Education, this is called Transition Planning, but this stuff should be for all kids. The great people over at Autism Speaks have created a tool kit about transition. It is excellent, and even if you don't have a child with autism, you should check it out.

I'll get off the soapbox for now. I hope I've got you thinking!

A Parent Who Sometimes Reads Directions

We still use Johnson's Baby Shampoo for Zane's hair because he still cries when he gets soap in his eyes and the No More Tears formula makes bath time less traumatic for us all. I bought this Calming Lavender version of the shampoo, in the mistaken belief that it might actually induce a state of calm. Unfortunately, my son never got the memo on that.

I was reading the back of the shampoo bottle (I was bored and there wasn't a book handy), and was shocked to discover these instructions:

"Wet baby's hair with warm water, apply shampoo, gently lather, rinse and snuggle."

What is wrong with snuggling, people would say? Snuggling is the very backbone of mother-child bonding! How dare you malign the very backbone of the mother-child bond? Bad Mama!!!

Snuggling is fine! I love snuggling! Snuggling is awesome! But don't you think you should dry your baby off first? Nobody likes to snuggle a wet baby, and babies get cold easily. The directions should have included, after the rinsing, "dry baby off", and THEN the cuddle.

RIP Zahra Baker

I work with special needs children because I want to, and just because I am who I am, I consider all special needs children to be "mine". "Mine" in the sense that I feel a strong sense of responsibility for their well-being and success. My job, as I see it, is to help them, and I derive a sense of satisfaction from that that carries beyond my absolute hatred of the mountain of paperwork that is special education in Texas. I remember their names and faces long after they've graduated and become adults, and I still get tearful remembering the ones who didn't make it to adulthood for various reasons. I may not be able to spend as much time as I would like with "my" students, but I make sure to keep up with them by talking to their teachers as much as possible. I make an effort to PAY ATTENTION.

Zahra Baker was so obviously a special needs child. She survived cancer, twice, but lost her leg and some of her hearing.Let me say this again: Zahra SURVIVED something, TWICE, that would have made a lot of adults just lay down and die. So this was a special girl, a fighter. But nobody was PAYING ATTENTION. She apparently didn't have anybody in her life who was paying attention to her. Nobody cared. Nobody cared enough about her to contact the authorities about her If someone was paying attention, they made a conscious effort to keep silent about what they saw. That is the only possible explanation, as far as I can tell, for why this little girl was missing awhile before her parents reported her missing. Maybe I'm wrong, but this sort of thing has happened too many times for me to be generous.

I am angry and sad that this wonderful, beautiful little girl with the interesting name had to fight for her survival her entire life, and when she should have been running around with her friends and enjoying the world, she was likely being mistreated by the very people who were supposed to love her and cherish her and protect her: her family. I am angry because this child, like ALL children, should have been celebrated. Instead, she probably died scared and alone and feeling that nobody loved her. And as if that wasn't bad enough, her body was thrown aside like garbage. Nobody deserves to be treated like that, least of all a special needs child.

Special Needs Blog Hop

So I'm trying this out to see if I can do it, techie-wise, even though my blog isn't really about special needs. Well, except for me. But I work with special needs kids, and I think that each and every one of them is wonderful. So here goes!