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?

Suggestions

Yesterday was the last day of ESY (extended school year) services for Ashley. For the last seven weeks, she has gone to school Monday through Thursday from 8am until noon, all in an attempt to keep her skills from regressing. The actual classroom services were largely a waste of time, but that is not what this blog post is about. This post is about school bus services.

Yes, I know, I have written many times in the past about the issues surrounding bus transportation in my school district. Well this post is not going to dwell totally on the negative. Bus services were, for the most part, excellent this summer. They did however start to fall apart this last week of school. And, I have a few suggestions so that doesn’t happen in the future.

The important and very positive thing about bus services this summer was that Ashley had the same bus, the same bus driver, and the same bus aide for six out of the seven weeks. That meant she could build a relationship with them, and she knew what to expect each day. She saw the same children on the bus each day, and the arrival and return times were very consistent. The driver and the aide took the time to talk to me and to get to know Ashley, and most mornings, that meant she skipped happily off to board the bus.

During this last week of school, the regular driver and aide were scheduled to attend training. That meant new staff – people who knew nothing about Ashley, people who were changing things up. And, as most parents of children with disabilities know, changing things up can be a minefield – and it was for Ashley.

So, rather than going on and on with my complaints, today I have decided to offer some suggestions!

First, I acknowledge that my school district really does want to provide acceptable transportation services. I also acknowledge that bus staff have lives too and must sometimes be out sick, out for training and other such stuff. What I would like my school district to acknowledge is that changes, even minor ones, can be very disruptive for many students with disabilities.

For example, some students like to sit in exactly the same bus seat each day. Making that student sit in a different seat could set a day of distress into motion.

Some students like to sit alone and some like to sit with a friend, often a particular friend. Deny either that accommodation, and you may get cursed, hit, bitten, etc.

Some students like music on the bus – some don’t, but all usually want things to stay the same – music or not. Play music when it hasn’t been played before, or all of a sudden stop playing the music – or God forbid, change the station, and you could have several meltdowns.

Each student on the bus has special needs, and some of those needs involve seizures or other such medical conditions. New bus staff needs to know that, or a seizure may be viewed as negative behavior. Some students may be deaf, and if the bus staff keeps talking to them and gets no response, patience will be tested. Some students may have a comfort item that goes everywhere with them. If there is no safety reason for denying that comfort item on the bus, the staff needs to know not to touch it.

These are just a few examples, things which I think could be resolved purely with communication. How hard would it be to have a diagram of the bus seats posted on each bus? Use an erasable marker to show which seat each student prefers to sit in.

Have a one page/one paragraph summary of each student’s likes and dislikes. I’m sure most parents would be happy to provide this. Keep that information in the bus, and require substitutes to read it before leaving the bus garage.

Just a few short minutes in the morning and afternoon for a substitute driver or aide to review information could make for happier students, happier parents, and an easier job for bus staff and teachers.

Do you have any other suggestions for improving school transportation and keeping everyone informed?

Love My Smile

When my family is out in the community, I know we can be quite the spectacle sometimes. The two in wheelchairs often race through the store aisles - Chip plays 'reckless driving' with Ashley while she giggles loudly - Ronnie burps loudly and we all pause for just a second and then burst out laughing - we put funny hats or clothes on one another - in short, we have a blast while getting our errands accomplished.

During an outing this past Saturday, we were heading to Target. Just as we pulled into the parking lot and began unloading all our paraphenalia, a van and a car loaded with adult group home residents and their 'staff' also pulled in. The residents were happy and excited, some skipping, some laughing, some chatting loudly about what they wanted to buy. The staff, however, did not appear the least bit happy.

The staff began shouting orders to the residents, "quiet down!", "get over here", "go in the bathroom right now", and "get away from the water fountain." It didn't take long for the smiles and eye twinkles to disappear from the residents. They fell into line and continued to follow whatever orders they were given.

This observation is typical of what has always bothered my about groups homes and the staff hired to support the residents. It's a job to the staff, and a job that many don't seem to like or enjoy. And their lack of enjoyment with their jobs has a direct effect on the folks they are hired to support.

It saddens me that people have their joy tamped down. Joy is often difficult for group home residents, or others with disabilities, to find. Let's do everything we can to support people when they are happy and joyful...even if it's a job.

Just Stop It

We spent a lot of time out in the community during our four day holiday. The weather was beautiful, and we were all in the mood for Summer. During one of our outings, we visited our local produce market. It's a little bigger than a farmer's market, but nowhere near the size of a grocery store, and the fruits and vegetables are always the freshest in town.

While we were there picking up our blueberries, strawberries, oranges, apples, limes and corn, we really irritated a lot of people. Like I mentioned in an earlier post, we seem to annoy a lot of people because we are slow at times.

I understand that we move through places like a choo-choo train, two wheelchairs lined up, and everyone else in a single file also. I do that purposely so we don't block any aisles. But people still get annoyed, and the thing that I don't understand is why I feel the need to say I'm sorry to those impatient people.

Whenever I see "the look", I say "I'm sorry", and try even harder to minimize the space we all occupy. Why do I do that??? Why do I apologize just for existing, but that's what I feel like I am doing. If I hadn't already gone out of my way to be as considerate as possible, the "I'm sorry" might be an appropriate response, but I do go out of my way, even to the point of trying to pick times that fewer people are in the placed we need to go.

So, while we annoy people frequently, I am now annoying myself more. Neither I nor my children have anything to apologize for, and I need to remember that.

Sometimes I Do, Sometimes I Don't

Do people sometimes criticize you for doing too much for your child with a disability? Do they say, “Let them do that? How else will they learn?”
I have, in fact, said similar things to other parents of children with disabilities. I even wrote a blog post titled Don’t Love Me Too Much on this subject.

I believe we need to let our children try and sometimes even fail so that they can learn. But often when I am ‘doing’ for my child, it’s more for me than her.

Yes, my daughter is capable of dressing and undressing herself. Yes, she is capable of washing her hair and completing her bath alone. Yes, she can get up and get something if she wants it. And yes, she needs to be pushed sometimes to learn how to do things for herself. But often the times I spend ‘doing’ for her are some of the sweetest times we share.

I love helping her dry off after her shower. I love helping her get dressed in her warm pajamas, and I love the feel of her skin against mine when I am putting lotion on her arms and legs. I love the softness of her hair as I blow it dry, and I love tucking her into bed just as much now that she is 14 years old as I did when she was 2 years old.

I realized a long time ago that I am a ‘helper’. I take great pleasure in helping people – my children, my neighbors, and my friends. It’s just how I’m wired to live. And with maturity has come the knowledge that sometimes it is good to step back and not ‘do’ for others, and sometimes it’s perfectly fine to ‘do’.

The moments of my life with my children are fleeting. I refuse to waste a single one of them just because someone else doesn’t agree with my approach to helping my child grow. Growth is not measured only in the number of skills one has, but also in how much they love and connect with others.