An Easter Tale (or ear)

Every year I like to recall a certain story to my boy about a certain younger boy who woke his mother up one Easter morning with urgency in his voice. This is how it goes: The young boy was poking his sleeping mother on the shoulder and whispering, "Momma, momma . . . " When her eyes came to a focus and met his, they were met with a deep concern. "I sowwy. I vewy, VEWY sowwy." The poor boy appeared to be about to cry. The still drowsy mom suddenly woke with a panic and sat up on one elbow. "Sorry about what, sweetie?" The confession was much slower coming than she would have liked, for all sorts of thoughts were racing through her mind. As he was working up his nerve, she noticed a wrapper clinched in his tiny fist and some tell-tale chocolate on his lips. Seems he had discovered the treasure left by the Easter bunny and had helped himself! "I ate the bunny's ears." "Oh? and what else?" "His tail." "And what else?" (A few tears now.) "All of him."

He knew he should not have done that, but it was pretty cute. It was quite a large bunny for one small fellow to consume at once, but he did not seem to suffer for it. He always starts with the ears and I always take a picture while he does. But not that year! And the bunnies have gotten smaller through the years -- just in case!

Hiatus Interrupted

Okay, so it has been a long time since I posted. Holla if you missed me! Turns out, things have been kinda topsy turvy, as life is wont to be sometimes. I suppose the event that took me away from bloggyville the longest involved my grandmother passing away. She was 89, had vascular dementia, and lived in a nursing home. I like to think more about other parts of her life than her last 8 years because she was a really fabulous lady.

It is great to have someone of upstanding character in one's lineage. Mind you, I have plenty of unsavory examples also in my lineage, but those can be for another post! My grandmother was a woman who served and gave a lot in her life. She was adventurous and even drove three of us grandchildren on a trip to Washington D.C., Jamestown, and to see the Biltmore-- all by herself. It was important to her that we see all that and know our nation's history. She was successful in those goals and in giving her grandchildren a trip we will never forget.

So many things could paint a picture of her, but one big thing stands out in my mind. She gave parties at her home for teenagers who had special needs. Her only connection was that a good friend's daughter had an intellectual disability, and my grandmother wanted her to have a good time, like all other teens do. I knew this was an unusual act of service when I was growing up, but not until I had my own child with special needs did I realize what a huge gift she gave her friend. Our kids SO need social opportunities.

I am grateful for her example of acceptance, giving, and serving. I suppose her life is a challenge to me to pick up that baton and follow in her determined way.

Who's Thinking About Next School Year?

I am!! In browsing around, I found some excellent material online that I wish I had found much earlier! Such good info about IEP meetings, involving the student and self-advocacy. Wow! I will be asking my son this last set of questions, for sure.

What Exactly Does Self-Advocacy Mean?

It means taking the responsibility for communicating one’s needs and desires in a straightforward manner to others. It is a set of skills that includes:

§ Speaking up for yourself

§ Communicating your strengths, needs and wishes

§ Being able to listen to the opinions of others, even when their opinions differ from yours

§ Having a sense of self-respect

§ Taking responsibility for yourself

§ Knowing your rights

§ Knowing where to get help or who to go to with a question

One of the best places to start teaching your child about self-advocacy is in his or her Individualized Education Program (IEP) meetings. Including your son or daughter in the IEP meeting provides him or her with an opportunity to learn and practice important life skills. Some advantages your child may gain by being involved in the IEP process include:

§ Learning about the impact of his or her disability

§ Practicing goal setting

§ Building teamwork skills

§ Developing an ability to speak up for himself or herself

§ Participating in a process of resolving differences

§ Gaining an understanding of his or her strengths and needs

§ Learning how to ask for and accept help from others.

Even very young children can contribute to their IEP meetings. If you feel your child is too young to participate in the entire meeting, you may choose to include him or her just in the opening of the meeting. This helps your child to know the IEP team members better and to start to be more comfortable in a child to display at the meeting. You can also receive your child’s input before you attend the IEP meeting. Ask your child if there is anything he or she would like to share at the meeting or to have you share. It can also be very beneficial to ask each team member to state one positive trait or skill your child has as you begin the meeting. Be sure to include your child in this sharing of positives. After the IEP meeting, sit down with your child and explain the goals and services or answer any questions your child may have.

As your child becomes older, the ways in which he or she can participate in his or her IEP meetings greatly increases. It is important to discuss the meeting process with your child beforehand. Role-playing being in an IEP meeting with your child can be a great teaching tool and may help your child to feel less anxious about participating.

Some Questions You May Want to Discuss with Your Son or Daughter Prior to the IEP

Meeting Are:

What do you want to learn or work on this year?

What are your special concerns for the school year?

How do you learn the best?

What do you need to be successful?

What would make learning easier for you?

What do you wish your teacher and other school staff would understand about you?

Discuss with your child how to handle the situation if something negative or difficult to hear is said about him or her in the meeting. Determine at what point, if any, you would stop the meeting and have your child leave. If the meeting is likely to be too stressful or negative, have your child only attend part of it and determine the agenda ahead of time with the team. Be sure to include your child’s input on the agenda. If your child chooses not to attend a meeting, ask if he or she would be willing to share ideas or opinions in writing or on tape to provide to the team.

Get more of this good stuff here.

Spring Break

Spring break was here and gone before I knew it! We had no plans, except for one day, which I will tell you about. The rest just kinda . . . . . happened. This triggers the planner in me every year – it makes me wonder about summer and what will fill my son’s days for those three months. If one week is a bit too much unstructured time for him, what about the entire summer? Yikes.

Our one planned day involved having some friends come visit from out of town. We all lived in the same city years ago and we met because of . . . you guessed it, Down syndrome. Our two boys have enjoyed each other’s company a lot lately, and we have even met halfway between our towns to eat together as families. It is nice to have another mom of a teenage son to discuss similar issues with. She is a thoughtful and conscientious mom with lots of good ideas. Because of her other two teens’ activities, she stays super busy but is so devoted to her middle guy, my son’s friend. I love her. Move back, please, J!!

When they arrived, we went straight to our nearby indoor pool for the boys to enjoy some swimming. This was mutually beneficial, as we moms got to get in lots (not all) of our confidential chatter without being overheard! When they were waterlogged, they got changed and we walked to a restaurant for sustenance (and a milkshake). The boys seemed somewhat more shy while we were at the table with them. Maybe we should have set them at their own table? At any rate, it was a great day with very special friends. That was a highlight of our spring break.

Now the boys are texting each other. We are loving this typical teen behavior and glad they can keep their connection going. Now it’s their turn for confidential chatter!

Wild Weird Wednesday

Life Lessons for Today:

1. Plans are nice, but life happens.
2. Interruptions happen.
3. It is good to breathe deeply.
4. Unexpected appointments happen.
5. Some things take much longer than the time I allot for them.
6. It is good to breathe deeply.
7. Some people are much too precious to sacrifice because of time stressors.
8. Waiting can be productive (cleaned out my purse, texted a few friends) and good for a relationship (played hangman with my son).

Thanks to Laurie at Living Power for a great post about waiting that I just read yesterday. How timely! She has some great ideas to fill our waits as we occupy exam rooms, etc.

I was still reminding myself to breathe deeply at almost 6:00 p.m. What a weird and wacky day. I had more waiting this evening, but with a plan.

Wait! Isn't that how I started this? Plans are nice, but life happens. My plans are not my own. His ways are higher than my ways. I can rest in that.

A Very Brady Kind of House with Flower Power

We have several unique features to our house, which was built in 1970. One of them is our "coke bottle" glass surrounding the front door. Oh, boy, was that gonna be the first thing I fixed! Nearly 13 years later, it still proudly guards sentry at the front. We have a cool wet bar with avocado green countertops, which I hear are back. The wet bar also boasts a lotus type light fixture. Groovy!

I have gotten rid of the swag lamps that once hung so gracefully from my bathroom ceiling. We have floored over the previous kitchen linoleum and tiled over "genuine Mexican vinyl" in the laundry room (wish I had a picture of that!). But our entry floor still looks like . . . avocado with potato chips in it. The avocado part is my description, but a visiting kid once said, "Hey! That looks like potato chips in your floor! Is it?"

An area rug kinda covered it, but I found another recently that I LOVE and it covers a little more. I don't feel the need to be rid of the floor anymore, especially when I think of walking on potato chips.

Do you like my new rug, too?

Making Life Easier

I have been organizing a friend's paperwork. Because I like it. I know that is strange, but she is dealing with a long term medical crisis in her family and she asked me if I could take it over for her for pay. She and I have been friends since college, and there is no one I would rather do this for.

I have enjoyed getting her stuffed chronologically filed and her bills on a schedule to be paid automatically. Dealing with several years' worth of paper has me thinking of the most efficient ways to do this, and it has me dealing with some of my own paper clutter. Photographs are my main paper issue. I have so many that I could never part with --so many in frames and oodles of albums. Space is becoming quite an issue!

I recently purchased an external hard drive and have moved over all photos from my computer. It feels great to have these backed up, but what about all of my pre-digital stuff? Looks like some serious scanning is in my future.

Tonight I was really getting down to the last of the photos and making some decisions about more albums, etc. I have even put several photos of ancestors in an album, all black and whites, names, dates of birth (if I know), and how they are related. Sweet N was right there with me, asking what he could organize. We even moved a little furniture around, placed a few things, and he got into a drawer with cords and electronics. He sorted and untangled these for awhile and did not want to quit! Later he said, "It feels good to be organized, doesn't it? It sorta makes our life easier, right?"

Oh, out of the mouths of babes. But where is that voice when I am tossing random things in a drawer and slamming it shut?Ok, just had to go and scan this one for ya! It is my paternal grandmother (standing, middle) who was the oldest of 5 girls. They posed with their mother for this shot in about 1936. I think each one looks absolutely stunning.