What Now?

So it's summer and your child with disabilities is too old for any camps (assuming you could find a camp that would accommodate their needs). What do you do?

As a single mother, I have to work full time. I am the sole provider for my family. I have aides for both Ronnie and Ashley, but the aides are not always comfortable taking them out into the community. And sometimes, to be honest, I'm not comfortable with the aides assuming that responsibility. So my children end up staying around the house all day, and rightfully so, getting very bored.

But even if I didn't have to work and could stay with Ashley and Ronnie all summer, what activities would we find to fill three months of days with no school? And getting a job is not likely since most of the non-disabled teenagers can't even find jobs.

Yes, there are museums and parks, libraries and movie theatres. But after the first month, some of those attractions grow stale. We can't travel all the time - the money for that just isn't there. We will take a week's vacation in August, but August is a long ways off.

So what do other parents do with their almost-adults with disabilities? How do you keep them interested and interesting; how do you help them maintain their skill levels; and most importantly, how do you help them continue to prepare for independence in the future?

The best I've been able to come up with so far is volunteer work. Ronnie is helping out with some office work at Sportable, the adaptive sports organization that runs his basketball and lacrosse teams. He is also learning to wash and maintain a lot of the sports equipment and wheelchairs. I haven't found any volunteer work for Ashley yet though.

If I can't come up with some ideas soon, it's going to be a very long summer, and I fear, a prelude to their lives after they leave school permanently.

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?

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?

And Then What?

Two different people asked me last week whether I intend for Ashley to stay in school until she reaches her 23rd birthday (which is allowed under IDEIA), or if I will let her graduate with her class. Since Ashley started high school this year, perhaps I really should have an answer to that question, but I don’t.

Those of you with young children with special needs probably haven’t given much thought to the age at which your child will leave school. I know I didn’t. That time just always seemed so far away, something I didn’t need to think about. But with Ashley in high school this year, should I have an answer??

My first thought is yes, Ashley will stay until her 23rd birthday because the more education she gets, the better. But then I tell myself that for the most part she isn’t getting an education in our school district. Her real education comes from homeschooling after school and on the weekends. So if that is the case, what’s the point of her staying in school. It’s not like she is going to get a standard diploma if she hangs around. In my state, she will get a ‘certificate’ of completion, and she can get that with four years of high school or with 7 years of high school.

Of course, whenever she leaves school, there must be a plan for the next years. Where will she work? Where will she live? How will she connect with people? Who will be her ‘community’? There is so much planning and so many supports to be put in place for the post-high school years, that it seems very overhelming.

I honestly don’t know how to approach this whole issue. If any of you have older children, and have faced this issue, I would love to hear what your decisions were and how you helped your older child move to the next phase of their life.

Today I am thankful for our pediatrician’s office which has office hours for sick children seven days a week.

What's In Your Crystal Ball?

I need your opinions on something.

Once a child with disabilities reaches middle school and beyond, schools place a bigger emphasis on vocational skills - preparing the children for jobs once school is over. IDEA 2004 definitely supports that:

In “Findings” of IDEA 2004 (Section 1400(c)), Congress found that “30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children,” educating them in the regular classroom so they can “meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children and be prepared to lead productive and independent adult lives, to the maximum extent possible.” (Section 1400(c)(5)(A))

But how does a school district and an IEP team determine what are appropriate vocational skills for a student? I would like to know your experiences, and if your child is too young for you to have addressed this issue yet, what are you expectations for the time when your child is old enough to discuss transition and vocational skills?

Here are some examples:

Do you feel it is appropriate for students with disabilities to have jobs in the school such as wiping tables and chairs in the cafeteria - or delivering mail and newspapers to the teachers - or cleaning up a classroom at the end of the school day? How about sorting utensils or putting toothbrush holders together? Or, learning how to use simple tools like a screwdriver and hammer? Would you like to see your child take care of plants in the school building or clean up/feed pets like hamsters or fish in the school?

Has your child had a great vocational training experience while in school? If you child is older and out of school, did the skills taught in the school contribute to their success as a young adult? Or, did you feel like your child was set afloat at the end of his/her school career with no skills to support productive employment?

What are your dreams for your child as they related to adulthood, employment and independent living? Do you feel your school team shares and understands your dreams?

And finally, are you frightened what the future holds for your child with a disability? I am, and that is why I need help with all these questions...

Going Postal

My daughter, Jessica, is 18 years old, and should be starting to find a job. Jessica is significantly cognitively impaired, but I strongly believe that there is a job that she can do and can do well. She has always said she wanted to be a nurse's aide, and I want to support her in reaching those dreams. And even if she doesn't realize that exact dream, she needs to find her place in the adult world. It's going to be really tough though given her outbursts of rage and aggression.

For years, 11 to be exact, Jessica has struggled with Reactive Attachment Disorder, a condition common in adopted children and which manifests with outbursts of aggression. Because of her significant cognitive challenges, traditional talk therapy has not been an option. All her doctors and I have been able to do in an attempt to control the aggression is to medicate her. I hate it, but she cannot be allowed to hurt herself or other people.

I had hoped that once the surge of puberty hormones subsided, her aggressive behavior would also. But the opposite has happened - she has gotten increasingly more aggressive, and as she has grown, that aggression has the potential to be very dangerous.

When Jessica is not being aggressive, she is the sweetest, kindest person you might ever meet. But when the moments of rage strike, and those moments are not predictable, everyone around her is in danger. So I wonder, how will Jessica be able to maintain a job when she can't maintain control of her anger?

Her school system, her case manager, other support staff and I have been working very hard to make sure she has the skills to do a job she would enjoy doing. But we are all at a loss as to how to help Jessica overcome her rage and aggression to the point that an employer would be comfortable hiring her.

Have any of you faced a similar situation, and if so, do you have any advice to share? I sure could use some...