Tuesday, December 16, 2014

Rose Colored Glasses

Within two days, we have received great news about three things related to Ben:

1. When Ben's old tricycle proved too small for him, we started the process to purchase him a larger one a few months ago. Ben's new case manager, who has been on top of the process, called yesterday to say that it had been approved. By the end of January, Ben will have a new blue bike to ride around on. Woohoo!

2. Yesterday afternoon, Ben brought home a letter about where he will attend middle school next year. I visited the two schools closest to our home and one stood out as the best fit. I wrote a letter requesting this specific school, stating the reasons and also called a few people to let them know our preference. I was prepared for a long appeal process if Ben did not get assigned to this specific school. Looks like I can put down my battle axe - Ben was assigned our school of choice. Hallelujah!

3. Since 2013, I have been working to get an accessible bathroom for Ben. It has been a long road with many many twists and turns. Just this morning, I received an email from someone who has been working hard to get Ben this bathroom. The email confirmed that the bathroom will be built. I am meeting with an experienced designer next week who is donating her talents. She will review our plans from over a year ago and make suggestions. Yipee!

In the midst of all this news, I got my first pair of eyeglasses, which happened to have red frames. As I was driving down the road, sporting my new glasses, everything seemed brighter and more vivid. I am not sure if it was my aided eye sight or the weight of worry lifted off of me, but I felt good. Positive thoughts, forced patience and a teensy weensy bit of letting go seems to have paid off.

Friday, December 5, 2014

No Such Thing As Free Coffee

Sean, Ben & Logan at Ben's favorite coffee shop, Smelly Cat.
In the last few weeks, Sean, our six year old, has expressed that he wishes to live with Ben and their cousins when they get older. According to Sean, he and Ben will share money, and Sean will cook supper (his word, not mine). Then he wondered where Ben would work. After talking about a few options, he decided that Ben could work at a coffee shop, wiping down tables and cleaning the floor.

We smiled at Sean's sweet idea to live with his brother when he gets older. Who knows how the future will play out, but it says a lot about what is in Sean's heart.

These conversations with Sean combined with a recent meeting with a mom with a 22 year old child with special needs really got me thinking. This mother was concerned about how her daughter would spend her days when she graduated in May.

I realized that Sean had a point and thinking about this now, and not later was important. Why couldn't Ben work or volunteer somewhere when he is older? And how much older? Ben could volunteer as a teenager at a community organization. There are places that he could develop his skills, form friendships and also begin a routine for when he is out of school permanently. Ben loves the fire department, libraries, coffee shops and sporting events - how could he serve at these places? What creative ways can we help him be a contributing member of his community? Does a cute smile and warm hug brightening a consumer's day count as a job? I think it does!

Lucky for us, other families have already forged their way in this arena. A family I know with a son with special needs worked at a grocery store and then the police department. At the library, a senior citizen and his case worker put DVDs back onto the shelves. Often I see a mom and adult daughter team working at the local children's museum, cleaning up the rooms throughout the day. A close friend sends her teenage son with Down Syndrome to the family farm to work with the chickens every summer.

There seems to be an openness to help our special children find a niche in the community. More likely, as parents, we need to welcome the idea of our children going out into the world and making their own way. We expect it of our typically developing children, plan for it and would be shamed if we did not let them pursue a future for themselves. It may be a different experience - a little scary, more emotional and time consuming, but it is still possible to let our children with special needs find independence as teens and adults.

About a day after those conversations with Sean, he asked "If you know someone, like a brother or cousin, who work at a coffee shop, can you get your coffee for free?" What appeared to be a careful thought process about Ben's future may have been a thinly veiled ulterior motive. Oh brother!

Monday, December 1, 2014

2015: The Year of the No

In September, a family counselor, after hearing our stories of stress and feelings of being overwhelmed with life, declared that we should cancel hosting Thanksgiving at our home. I looked at her dumbfounded. Un-inviting family members and changing the plan seemed like crazy talk, but it also seemed ingenious. Rather quickly, Ryan and I agreed with her proposal. I called family members and told them the situation. The relief I felt was incredible.

The counselor's permission to change the plan and essentially say "No" to hosting Thanksgiving got me thinking about commitments and stress, and it lead me to declaring 2015, The Year of the No. In fact, I have used the last of 2014 to practice. The following issues have helped guide me in making my decision to say yes or no:

Making the Choice
Please do not read this and think I am suggesting you say no to anything that comes your way. I am saying to think about options before blurting out yes. Ask yourself:
  • Why am I accepting this request?
  • Why am I offering to host/attend/join?
  • Is this a good use of my time?
  • What part of my life will change?
  • How will my family be affected?
  • Do I have the time and energy to take this on?
  • How will the person or organization making the request be affected?
Consider the answers to your questions before making the decision. Be sure you are making an informed and conscious choice.

Scope Creep
I am not a Yes Woman, but I can get in over my head at times. It usually happens slowly and unitentionally. In project management, they call it "scope creep", when the boundaries of a job begin to blur and more items get added to the list. Before you know it, you have too much to handle.

You made a promise, a long time ago, in a weakened state of mind, to a close friend, and saying no now would make you feel so guilty. If the guilt outweighs the actual promise, probably best to go ahead and do whatever you promised. But if you can get beyond the guilt and find another way to handle the situation without letting too many people down, then try it out.

When we called the first family member about cancelling Thanksgiving, they seemed relieved. They have an elderly pup that needs their love and care. When researching hotels in our area, they could not find one that would accept a dog.

You cannot predict how people may accept your choice, but sometimes it may work out for their benefit too. Letting guilt make the decision for you may not prove to be the best choice for anyone.

A local magazine offered the opportunity for me to write a weekly blog for them about special needs children. Although I was excited by the idea of getting more exposure, it was an unpaid position and I knew that writing new material for the magazine's website and eSpecially Ben would create a tremendous amount of pressure for me. In the end, I said no.

The editor came back with another offer, which I took.  She asked me to write posts quarterly with some of my past posts being reworked.

Sometimes, the answer is in between a no and a yes. Finding the right blend of needs can get to the best opportunity for both parties at that specific time. As lives change, the opportunity can be molded yet again to fit the needs of everyone.

Tell the Truth
In all the examples above, I told the truth about my situation and the people involved understood. Everyone has been on the receiving end of an offer, opportunity or promise that is too much for them to handle at the time. Empathising is easier than we imagine. And it works the other way - when we hear no, we understand as well.

My best friend hosts a Holiday Cookie Exchange Party every year. I love participating because the cookies are delicious and it is social time with just women. This year, when she asked me about a specific date for the party, I told her that I would not be attending. I love the event, but the amount of baking ahead of time is stressful as well as the added pressure to avoid eating all those yummy cookies. (I was the Cookie Monster in a former life.)

My friend considered what I had to say, and she sent out an invitation to have lunch at her favorite local restaurant. The fun and social time will still be met, but no one has the extra cookie calories or stress of baking.

Whether 2015 is The Year of the No, or The Year of the Yes, make it your own choice. Using a thoughtful process to make your decision will help you feel in control of your limited time and energy. Setting priorities about your family time, health and career will guide your decisions. Being creative with the opportunities may lead to everyone being happy with the outcome.

Happy Almost New Year!