Thursday, September 30, 2010

Never a Dull Moment

Earlier in the week I actually had time to finish my 2009 Christmas scrapbook pages, something that's been on the "to do list" for, well, 9 months. That fact should have been a clue that something was coming. And of course it did, when I woke from a nap (I had time for one of those too) my friend called to deliver the disturbing news.

Our school district announced in a meeting this week that they may be closing schools throughout the county. This means displacing students, moving programs and basically a big headache for families and students, not to mention the staff who work at these schools.

For us, Logan attends a public Montessori school within walking distance of our home. This is one of the schools slated to close. They plan to move this program to the school Ben attends, about 20 minutes from our home. And what does that do to Ben? Not sure, but probably displaced to another school in the county.

So our neighborhood is on fire, getting a plan together to fight these proposals. Attending meetings, writing letters and speaking out will be on my "to do list" for the next few weeks. Although I am upset about our school in the neighborhood closing, I am also concerned for Ben's situation. He is in a wonderful school with a superb teacher. Replicating that will be difficult.

So no more naps or scrapbooking. I am on a mission, luckily with the support of many friends and neighbors. Here are some sites to check out to find out more information:

Save Mecklenburg Schools 
Join this group on Facebook to voice your opinions and stay up-to-date with information

Charlotte Observer Blog
Ann Doss Helms covers the education beat for the local newspaper.
Board of Education
Find out about meetings, agenda items and topics for discussion.

Charlotte Mecklenburg School System
Get a general overview of the school system.

Wednesday, September 29, 2010

An Apple a Day

Apple Picking at Sky Top Orchard in Flat Rock, NC - At the end of the day, Ben decided to chomp down on one of the apples he found. Although, sitting in this first photo, Ben started out laying down with the apple.

When Ben tired of the apple, he let it roll down the hill.

(This may seem like an ordinary thing, but for Ben it took a lot of coordination to eat this apple on his own.)

Monday, September 27, 2010

Magic Marker Monday: Friendship

Ben brought this home from school on Friday. The class is doing a unit on friendship. Earlier in the week, Ben's teacher told me Ben got in trouble for putting Lorena's whole hand in his mouth. The teacher said he likes her a lot - I guess that's one way to get her attention.

Thursday, September 23, 2010

Mercy, Salvation and Brushes with Fame

This weekend I ran my ninth race of the year - Run for Mercy - at Reedy Creek Park. It was a 5K trail race, organized by an international organization, Mercy. They raised over $21,000 for the local chapter. If you are not familiar with this organization, check it out. They do amazing things for girls in crisis world-wide.

And they also know how to plan a race. With "door" prizes, kid games, a fun run, kind-of superheroes (Captain Salvation, Monkey Joe and the Cow from Chick-Fil-A), food and drinks, the race was a true family event. The race was well-orchestrated with water available on the trails and volunteers directing us at every turn. I have been running these trails with a friend so I was prepared for the terrain.

The best part of the race was Ryan and the three boys cheering me on. It was a big boost to know that they were waiting for me at the finish line.

The kids took part in the Fun Run. Sean ended up running way ahead. He rounded the bend and the trees blocked my view of him. Luckily Captain Salvation was there to save the day. He (and his wife) offered to take Ben for me so I could catch up to Sean.

We ended up taking photos with Captain Salvation - who was wonderful with the boys. He suggested that I enroll Sean in some sports because he ran so well. That's nice of him to say, I thought at the time.

Captain Salvation's wife promised to send me the photos through her husband's Facebook account. Later, on Facebook, I found out just who that masked man was - Shane Burton, a former defensive tackle football player for eight years, two of which were with the Carolina Panthers. His comment about Sean needing to enroll in sports carries a lot more weight now.

Wednesday, September 22, 2010

Special Exposure Wednesday: Ticklish Knees

Ben has ticklish knees and it never fails to get him going!

Click here to see other great photos.

Tuesday, September 21, 2010

Expressing, Receiving and... Articulating

Sean is 2 1/2 and his speech is okay, but not great. Probably in time, it would all come together, perhaps needing speech when he reached Kindergarten. But with information and resources at our fingertips, we had his speech tested.

As expected, his expressive and receptive language scores were good. Sean's score on the articulation test was  concerning. This was not a surprise because he leaves off the final consonant on most words - Ben is 'Be', Chair is 'Cha' and so on. Another concern is using correct sounds for words. Car sounds like 'Har'.

Ben's speech therapist, Kenyatt, can come early and see Sean at our home before Ben's appointment. Sean is very familiar with Kenyatt, and I have introduced the idea to Sean as "his turn" to work with Kenyatt. 

When I have tried to show Sean how to make a specific sound, he is eager to learn and tries to move his mouth and tongue to make the sounds. I am glad we have caught this early. I believe it will be a few months of helping Sean learn how to manipulate his mouth and tongue and teaching Ryan and I how to continue this education throughout the day. Kenyatt is trained in Prompt Therapy and believes that this will help Sean immensley.

Monday, September 20, 2010

Magic Marker Monday: An Artist is Born

Sean, age 2 1/2, is beginning to scribble.
Click here for other works of art.

Saturday, September 18, 2010

Blogging for One Year

It was one year ago today that I started this journey into blogging. I really had no expectations about where this would lead. I didn't know much about it. I know a bit more - there's loads of talented bloggers sharing information, making connections and opening up a new forum for parents with special needs children to share their experiences.

Unexpectedly, I have gained more from this experience than I have given:

1.  I am on a roller coaster - Our experience seems more intense, faster paced and definitely mind blowing at times. The posts help me see what our lives actually look like. Finding out about seizures one day, hearing about huge progress in speech or occupation therapy the next can be exhausting. The posts are a reminder that I am on a roller coaster ride of emotions and that it is okay to slow down or even get off the ride for a little while.

2. I feel supported - The connections made through the internet are amazing. To know there are other families facing similar issues and surviving makes me stronger. Their is a certain kinship developed by reading others' blogs and commenting on their posts. 5 Minutes for Special Needs is a wonderful site supporting people like me. For some unknown reason, I have readers in Israel - that amazes and delights me.

3. I am reaching out to strangers - When I am out and about with or without Ben, I come in contact with  people in the same situation as us. I give them a card (yes, I had cards made on Vista) so they may contact me or at least use the resources I have listed on this site. Having the site has given me a new confidence.

One woman I met this summer is a parent to a 31 year old son with Spina Bifida. She proudly explained to me that she fought 25 years ago for rights for her son in the schools and made it easy for parents like me. I have her card and will use it - she has so much knowledge, experience and perspective. I can learn from her.

4. I am healing - Ben's behavior therapist recently finished her dissertation on how parents cope and process having a child with special needs. Through her focus groups and research, she determined that there was one factor that separated parents who could cope with having a child with special needs and those who had a harder time. It was the ability to contribute to the greater cause and see the big picture. I hope that I am on that course with my volunteering and writing.

5. I am having fun - There are times I feel the pressure to write a post to keep up with my goal of four per week, but it is a good stress. I look forward to writing, brainstorming topics and planning my posts. It is something that is completely mine, and I get energized by the entire process from beginning to end.

6. I have extended my family
- I live many hours from my family. I talk with my parents and siblings regularly, but I do not have a lot of communication with extended family. This has been a great way to stay in touch with them, letting them know about what we face each day of our lives. My husband's family members - distant cousins whom we see at weddings, funerals and reunions - have been loyal followers from the beginning. I feel love, caring and understanding from the family members who keep up with my posts.

My posts have shown family members a side of me that they did not expect. This is a chance for me to share with others what it feels like to be Ben's mom.

7. I get to do what I like - Not only do I get to write, I get to design and create. And it's a reason to stay up late, because I love when I am alone, it's quiet and no one is tugging at my sleeves, pulling my hair or biting my feet - and that's just what Ryan does to get my attention.

Thanks for the year. I will try to press on.

Thursday, September 16, 2010


I attended Ben's school's PTA meeting this week. I am on the board as the Special Needs Liaison. I came up with that title last year, and I am still not sure what exactly my role is.

Last year, I spent most of my time learning how the group worked and seeing what the school needed. I know from experience that newcomers with ideas can easily be shot down if they do not know the customs of the group. I planned a fund raiser for the school, made posters advertising Box Top collection, wrote Ben's teacher's monthly newsletter and helped the physical education teacher with Water Day. I feel like I did my time.

So this year, I felt more comfortable asserting myself by planning an event for the students with special needs. Monkey Joe's is a place where kids go to play video games and run, jump and bounce through obstacle courses. Or if you are Ben - you go there to eat pizza and drink a slushy. Every third Wednesday night, for one hour, is free for children with special needs. I asked the PTA if we could advertise to our students about this event. I was given the go ahead.

At the meeting this week, however, I was told that this type of event may not be held again because the school system believes in inclusion. Holding an event just for one population may be seen as exclusive. Privacy issues were also thrown into the argument.

Hmmmm...I sat for the rest of the meeting frustrated and angry. Probably steam would have come from my ears if I had been a cartoon character.

But I waited until the end of the meeting. Oh, how I have grown and matured.

I spoke with the one individual in the meeting who made these statements and happens to have most of the power in the room. I explained that this event was not meant to be exclusive by any means. Any student could attend. It would be geared to and advertised specifically to the children with special needs. I asked if we could just see how it went and then make a determination if this is something we would like to continue. If it met a need, perhaps taking a look at this type of programming, would be beneficial to the school. On the off chance that some parent of a typical child felt excluded and made a stink about it was not a good enough reason to stop this type of programming.

I also explained how many of the students and their families did not come to the events offered at the school for lots of reasons - uncomfortable with the unknown, unsure of their child's role, and any other emotions associated with taking your child out who has special needs. I know tonight when PTA discussed Math & Science Night and Odyssey of the Mind where Ben would surely be welcomed, but would have a hard time participating, I wondered how these were considered inclusive.

Two years ago, Ben performed in a chorale concert. We were told to come, dress him in beach attire, bring props and that was it. We did not know what to expect. Ben was one of three children, of a class of nine who performed. Where were the other families and their students? If I was scared for Ben being up there, I am sure other families felt the same way. Would it feel like our child was on display? After this experience, I suggested to the music teacher to write a separate letter to the families with special needs children, letting them know what to expect. I also thought that perhaps a smaller venue could be used, plan the event earlier in the day or the special education classes could be paired with a regular education class.

Our children are different and sometimes that means that different programs, services and policies are needed. By lumping them in with everyone and calling it inclusion, valuable experiences are lost.

Having this event at Monkey Joe's was a way to offer a safe place for families to gather with their special child, hoping that some connections could be made. I am still looking for friends for Ben and meeting the parents and families helps to build those relationships.

I think I was understood after my discussion with her. I also think this person comes from a caring place. She has a big job and has to think of lawsuits and politics. In the end, she protects and respects all of her students.

Let's just hope someone shows up to this event.

Wednesday, September 15, 2010

Special Exposure Wednesday: First Day of Preschool

Sean, age 2 1/2
Sean was very aware of his two older brothers starting school last week. He was not sad to see his brothers go as much as he wished he could be going to school as well.

On Friday, the day set for him to start preschool, I made sure to remind him that he would be going to school that day. Sean's response, "My turn!"

When I dropped him off, he walked ahead of me, never looked back and was not happy to leave four hours later at pickup time. He is the independent one, I should have seen it coming.

Click here for more photos.

Tuesday, September 14, 2010

Boot Camp

Since Ben was two or three years old, we have joked about finding a Boot Camp for him. If you keep up with this blog, you will know that Ben is very good at pretending he cannot do certain things. He is tricky and successful in fooling the most seasoned professionals and parents.

When Ben was three, he napped in a pack and play, near the window, about one foot away from a table with a few items on it. Ben could not stand, walk or pull up, or so we thought.

One afternoon I walked into the room Ben was in and found the items from the table on the floor. I had not noticed them there when I put Ben down for a nap. I immediately blamed it on my husband. Who else would have carelessly left all those items on the floor? It did not cross my mind that it was anyone but Ryan.

Next day, same thing happened. The items on the table were on the floor. It was strange and unsettling. And I could not blame Ryan anymore. He had cleared his name. This went on for a few more afternoons. I checked the windows to make sure they were locked. Was someone coming through the window and rearranging my nick-knacks?

Finally, I tried peeking in the window and videotaping to see if it was Ben. And it was. The little guy was pulling up and reaching as far as he could to get the items off the table.

At seven years old, Ben is still up to his old tricks. Last week he fooled his new physical therapists - feigning low to no muscle tone. He acted like a rag doll. Then minutes later with the hope of going home, he walked out the door holding one hand with excellent posture and control.

So it got me thinking about Boot Camp again. I found this site: Ability Camp
I am researching what they offer, techniques used and expenses.

I imagine Ben in fatigues with a crew cut, Commando crawling through an obstacle course, hopefully with leaders who have seen his kind before and know how to motivate. More likely, Ben will con them with his smile and good looks and have his favorite meals brought to him while watching Bob the Builder.

Monday, September 13, 2010

Magic Marker Monday: Two Fish, Blue Fish

Ben, age 7, made these at school with construction paper, crayons and tissue paper.

Click here for more works of art.

Thursday, September 9, 2010

Hazing the New PT

Ben is having major turnover in private physical therapists. He is still at the same agency, but the therapists are all moving. To the agency's credit, they have found qualified energetic PTs for replacements.

I always give a new therapist my talk: Ben, although super cute, is a conniving manipulative 7 year old. Don't believe anything he tries to get past you. Be firm, yet loving with him. If he rubs his eyes, he is faking tired. If he yawns, it's the real deal. And after saying this, no one believes me until they witness it themselves.

Ben pulled a fast one yesterday on a newbie PT and pretended he could do nothing. When it came time to leave, he walked one handed 15 feet, then up and down stairs to the car, and for his finale stood leaning against the car unassisted.

Luckily, the therapist was watching.

Wednesday, September 8, 2010

Vampire Fury

If I have been neglectful, it is because of my recent addiction to the Twilight Series. I am about to read the fourth and final book. I expect to go into a depression when I am finished. I usually do after a series - I could not read for months after Harry Potter's finale. Hopefully, I will be able to keep going this time.

I just need to find out if Bella finally becomes a vampire.

Wednesday, September 1, 2010

Special Exposure Wednesday: Back to School

Logan's first day of Kindergarten and Ben's first day of 2nd grade.

Click here for more photos.