A Hot Cup of Coffee

I so wish that all of Ashley's school years could have been as positive as high school has been for her. I credit Ashley's teacher, Mrs. Marsh, for all the good things that have happened and continue to happen for Ash in school. Here is a link to just one example of those good things (Ashley can be seen close to the end of the video clip):

The Tucker High School Coffee Shop

Thank you, Mrs. Marsh, for caring and for making a difference in Ashley's life and the life of all your other students!

Thinkbeyondthelabel.com

I love these videos, and not just because in a very few years, I will have two children with disabilities entering the workforce (hopefully).

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!

How To Begin?

Are you the parent of a teen with significant disabilities, or do you provide services and support to that teen? If so, I need your advice.

It’s transition IEP time for my Ashley. Although technically my school district and I should have been talking about transition already (Ashley is going to be 16 years old next month), I was too focused on her moving to high school and receiving appropriate educational services. But now it is time, and I honestly am not sure where to start.

I mentioned last week that I was very pleased with the IEP and transition planning for my 20 year old daughter, Jessica. But Jessica’s disabilities are more commonplace than Ashley’s. Jessica fits into a model transitional approach and Ashley does not.

Ashley, as you may know if you have read my blog previously, is deafblind. She also has a seizure disorder, and her seizures are not completely controlled by medication. She still has 2-3 seizures a day on a good day. She approaches life with unbridled exuberance and doesn’t mind sharing her opinions, likes and dislikes with anyone.

Throughout elementary school and middle school, my school district underestimated her abilities. High school appears to be different. She has teachers who care and believe in her, and I truly think they want a good transition plan as much as I do.
But how do we get there?

So here’s where I need your advice. What approaches to transition planning for a teen with significant disabilities have you seen work successfully? What were the pitfalls along the way? And most importantly, is your child or the child you support happy with where he/she is in life post-school?

Thank you in advance for any help and advice you have to offer!

The Next Phase

The struggles to ensure a future for our children with disabilities never ends, does it? First we have the school battles, fighting for the things we know our children will need to succeed in the future. Be it a special reading program, instruction in how to travel with a cane, or extra school time – it often seems that we have to fight for everything.

Then there are the medical issues we face. The search for a diagnosis and proper treatment. Sometime we get lucky and find doctors who share our commitment to children with disabilities, but more often than not, we endure long waits, doctors who don’t ‘get it’, and other medical staff who act like we and our children are a nuisance.

And I would be remiss if I left out the struggles for community acceptance, finding a church home, and all things surrounding physical accessibility.

I am now, however, moving into a new realm of struggles – the fight to ensure my Jessica can find a job that she likes and which she feels is something she wants to do with her life.

I had sincerely hoped that the school system would do an adequate job of preparing Jessica for employment. IDEIA says they have to. Well, I don’t know about you, but that hasn’t happened yet. The school has worked on things like cooking, doing laundry, and hanging up clothing. But what about filling out a job application, showing up for work on time, getting along with co-workers, and specific skills that Jessica would need to find a job?

I knew I couldn’t count on the school system to completely prepare Jessica, but I had an ace in my pocket, or so I thought. Our state has an agency called the Department for Rehabilitative Services. Their published mission is to help people with disabilities find employment.

Since our last two meetings with that agency involved me taking an attorney with us to the meeting, you can imagine how well that is going.

I won’t go into too many details yet, but this agency that is supposed to help Jessica seems to grossly underestimate her abilities, and in fact, will only speak to me when Jess is in the room.

I’m going to keep trying. I’m calling for an IEP meeting and inviting the DRS staff. My hope is that the two organizations will work together for the common goal of preparing Jessica for employment.

Shall we start taking bets now on how well that will go?

A Virtue

Pretty much everything we do as a family takes a long time.

When we decide to go out, we have to start getting ready at least 30 minutes before we need to leave. Backpacks need to be packed - medicine needs to be packaged - trips to the bathroom need to be made - extra food needs to be brought - and 'diversions' need to be remembered. I feel like we are being spontaneous if we get out of the house in under 20 minutes.

Getting two children in wheelchairs into our vehicle takes a while also. Then making sure everyone is buckled in and nothing has been forgotten, and we are usually pulling out of the driveway in another 10 minutes.

When we arrive at our destination, we reverse the process - and it takes a while. Chairs unloaded - children loaded - backpacks and other paraphenalia accounted for - there goes another 10 minutes.

But it's when we are leaving a public place - a store or restaurant for example - when our slowness seems to really irritate people. Whether it's the person waiting for our parking spot, or the people whose paths we are blocking with the wheelchair ramp - often they really get annoyed with us.

I've also noticed that annoyance on school mornings when the bus arrives. As with our vehicle, lowering the wheelchair ramp, backing Ronnie's wheelchair onto it, making sure the safety strap is in place, then raising the ramp into the bus takes a few minutes. After Ronnie is on the bus, then it is Ashley's turn to walk to the front of the bus and board via the steps. She can't board the bus until Ronnie is on because the bus aide must be there to assist her up.

There are usually 3-4 cars stacked up in either direction waiting for the bus to turn off the flashing red lights, and I can read the impatience on the driver's faces. Sometimes a driver will get so impatient that they will turn their car around and take another route.

Why the annoyance? Why the impatience? I really don't try to go slowly - it's just the way things are for my family. And really, is an extra five minutes such a burden to others?

Anxious To Make It Better

When I was young and in school, I would start to get both excited and anxious this time of year. Knowing the start of school was right around the corner brought thoughts of new starts along with a new backpack. I loved the smell of new books and stacks of perfectly lined paper. I looked forward to packing my lunch in a shiny clean new lunchbox, and all my pencils were sharpened weeks in advance.

I also experienced a little anxiety. Would I fit in? Would I have lots of friends? Would I be able to find all my classes, and would I be able to keep good grades? But the excitement always overshadowed the anxiety. I wish that could be the case for Ashley.

Ashley loves school, but transitions are difficult. This year brings a multitude of those transitions – high school, a campus type of school, different teachers and aides, different students, a different layout to the classrooms, lunch rooms instead of lunch room, and new nurses and other administrators. She should have had some preparation in her last year of middle school to help with the transition, but she didn’t.

More often than not, students exiting middle school visit the high school they will attend. They meet the staff and walk around the school so the experiences in September are not so overwhelming. But that didn’t happen for Ashley, and when you throw in the fact that she is deafblind, it’s easy to see why I am so anxious.

I’m going to do my best to make the beginning an exciting time for her – new clothes, new shoes, a new backpack and lunchbox – but I’m not sure what else to do.

I could use some ideas….

Stranger Danger

I need advice. How have other parents taught their children with intellectual disabilities about the danger of strangers?

Jessica, my now 17 year old daughter, is extremely social, outgoing and friendly. Those are for the most part very good qualities. However, she has yet to learn how to distinguish when she should be friendly towards someone and when she shouldn’t. Jessica has never met a stranger. Everyone she meets she treats like a long-lost friend – hugging, smiling, holding hands. If an abductor drove up next to her, said her name, and invited her to get in their car, she would do it. There would be no need for puppies, candy or any other item to lure her in. She would get in the stranger’s vehicle merely because the stranger smiled at her.

I’ve tried, and Jessica’s teachers have tried over the years to explain dangerous situations to her. But it’s not working. Now that Jessica is 17 and will be 18 in just a few months, I am really starting to worry. Jessica has expressed the desire to live independently as an adult, and I really want to support her in that decision, but I am very worried. Not only will I worry about her getting in a stranger’s vehicle, if she lives independently I will worry about her letting a stranger into her apartment or entering a stranger’s home herself.

Does anyone have any suggestions for teaching Jessica how to distinguish a safe situation from and unsafe one? For a quick snapshot into Jessica’s level of functioning, she has a moderately significant intellectual disability. She reads at a second grade level but without any real comprehension. She writes at a first grade level, and she does math at a 3rd grade level. She doesn’t handle criticism well, and she does have an explosive temper.

Any and all suggestions would be much appreciated!

Leavings

If you leave me now
You'll take away the biggest part of me
Ooo oh, no, baby please don't go

And if you leave me now
You'll take away the very heart of me
Ooo oh, no, baby please don't go.
Ooo, oh, girl, I just want you to stay
(Peter Cetera, 1976)

I mentioned in my Thankful Thursday post yesterday that Ashley has a new intervener at school. Also known as a one-to-one instructional assistant, Mary Beth will be Ashley’s eyes and ears during the school day. The transition from Amy, the previous intervener, to Mary Beth, was handled extremely well by my school district. Amy remains in the same classroom as the “classroom instructional assistant”. That means she will be around as Ashley adjusts to Mary Beth, and if Mary Beth has any questions, Amy is always available to answer them. For once, Ashley did not have a support person just disappear one day to be replaced by someone new the next – a situation that happens often to our children with significant disabilities.

Preparing our children with significant disabilities for these transitions can be a difficult task, especially when the transition occurs quickly. How do you explain to a young child who lives more in a concrete frame of mind that one of the special people in their life is moving on? How do you explain that someone new will be taking over? How do you help your child develop a positive relationship with the new support person when they have a tough time understanding where the old support person went?

What about family and friends that move away, especially if the distance is so great that seeing the departing person will happen very infrequently if at all? And, how will I explain to Ashley when her beloved brother, Chip, goes off to college? I can’t think of a picture symbol that would explain those concepts.

Often, for typically developing children, letters and phone calls can be exchanged after a transition. Parents of typically developing children may struggle with explaining the transition, but words can usually be found. What happens to the child who can’t hear the words or can’t understand the words?

It’s obvious from this post that I have more questions than answers. If any of my readers have suggestions or just wish to share their experiences with transitions, I would love to hear what you have to say.