Tuesday, August 30, 2011

Mickey...Here We Come!

Ben was accepted by the Ace & TJ's Grin Kids program this year to visit Disney World. Ben has graciously asked the rest of his family to chaperon him. Woohoo! We are going to see Mickey!

If you just started reading eSpecially Ben, please go back and read about our history with Ace & TJ.

We will keep you updated on our Disney plans. So far the kids have watched the Disney Vacation DVD no less that 15 times. To say they are excited would be an understatement. Ryan has plans to have us at the gates at 7am each morning with itinerary ready (I am not making this up). For Ben, he is not going to know what hit him!

Check out the Grin Kids Website - your family may qualify to participate in the program. And if you just want to support the organization, Grin Kids fund raises throughout the year for this program. If you are interested in seeing how you can donate or volunteer, there are resources here.

Monday, August 29, 2011

Tough Decisions - Follow Up

Hmmm...If I knew such a controversial topic would get me so many comments on Facebook, here and private email, I would have made up some others before this.

Most of the feedback I received was that I should have told the camp director right when it happened. And looking back now, perhaps I should have. With the circumstances the way they were, I really think my best option would have been to ask the speech therapist to come forward with the story. He had all the information - when, where and who. And he would have done it. And it could be argued that, really, he should have done that immediately without even telling us first.

Thank you all for your comments, ideas, thoughts and suggestions. Everyone was supportive and worried for Ben. I know I learned from the experience and would approach it differently if something similar were to happen again. Although I hope your family does not have to broach a subject such as this, but if so, you will be better prepared to act because you read about it here and had time to think about your own response.

Thursday, August 25, 2011

12 Step Program

A few weeks ago I wrote about our family's dependence on Ben's Convaid Stroller and how my realization of this addiction made me change a few things in our lives. For one, Ben takes his second dose of seizure meds earlier in the day. I believe that the meds contribute to Ben's wildness and sleeplessness. This change seems to have worked. We have not seen many 1am and 3am's lately!

Next, I called Ben's new school to see how we can get Ben on the bus without going in the stroller. I want Ben to walk up the stairs, with assistance, and then once off the bus at school, go directly into his walker.  There are many "steps" that need to happen for this to actually happen, i.e. Ben has to get tested by a school physical therapist to see if he meets their guidelines. I am hopeful that even if he is not approved by the start of school, I will at least insist that he is met with the walker at school. I want the new school's staff to visualize Ben as a walker. In fact, I want everyone to see Ben this way. It changes the set of expectations people apply to him.

Then I emailed all Ben's therapists to let them know that kid gloves are to be taken off. For the past several months, I have told the therapists to take it easy with Ben while we play with seizure meds. I shared with them the goal to get him walking to the bus and they have all responded with plans to practice. PTs are working with Ben going up and down stairs while holding on to the railing. The OT is also working on the grab and release skill for holding onto the railing. We have talked in speech about following the commands for "step up", "step down", etc. I also think a video of someone going up and down the bus stairs would be helpful.

At home and when we are out and about, we are using the stroller in only extreme circumstances - it is midnight and Ben is still awake or for very long walks. Otherwise, he is on his own. I think Ben is sitting in a regular chair at the table more consistently for meals. We tell him dinner is on the table and if he is hungry, he crawls on over.

Finally, I asked the camp to follow suit with all these ideas. We left the stroller home each day and Ben used the walker at camp. This gave him more freedom and independence. On the final day, they had a party and awards ceremony. Ben received the "Watch Out, I'm Mobile!" Award.

We all set the bar higher and it seems that Ben is ready to meet and exceed it.

Tuesday, August 23, 2011

Tough Decisions

During camp this summer, an older female counselor made a favorable comment about Ben's genitals to his speech therapist. The speech therapist did not know this women and definitely felt uncomfortable with her making that kind of comment to him.

When I got wind of it, I knew it was a strange and weird comment to make about a child, especially to someone unknown to you. I knew it was unprofessional and that the she would probably lose her job over the stupid comment. So I made the decision to not say anything until camp was over. I weighed the positive and negative impact of this woman losing her job to Ben's experience at camp - less staff available, lower staff moral, etc.

One of my fears for Ben is to have him molested and he not have a way to tell us. I did not think that this woman was abusing Ben, I just think she said something in passing that she may have thought funny to share with someone else. I do think that when working with any children, sexual innuendos, jokes and passing comments need to be left at home.

What would you do? How would you handle this type of situation? Should I have complained right away?

Sunday, August 21, 2011

eSpecially Parents August Edition: Paula's Story

Let's see...Tye was diagnosed with autism 13 years ago.  Over the course of that time there have been varied responses to his diagnosis from family members and friends.

My family, for the most part, has been really good with my son, taking some effort to try to make things easier. There are times when some can be totally clueless too. My Mom is awesome and seems to get most of it (or at least tries). My father has been a true disappointment.  He doesn't know how to interact with Tye and his half-hearted attempts are awful to watch.  

On my husband's side most of the older kids ignore him, which hurts, or look at him funny when he makes the sounds he makes or does some of the things he does.  The younger ones notice he's different, but haven't quite figured it out yet.  His parents are not too bad with him, although they will allow him to do some things he shouldn't do because they feel bad for him and aren't sure how to reprimand him when he's doing something he shouldn't.

I only have one good friend, who is also a parent of a child with autism.  She gets what it is like and has been a good person to vent to and to lean on for support.  I am grateful to have one true friend.

Other friends I had just disappeared  from our world.  I'm not sure what happened.  I thought we were close because we knew each other since middle school and were in each other's weddings, but they stopped keeping in touch.

I'm sure it's hard for others to "get" what it's like raising a child with a disability.  Your child can't do things or tolerate things like a "typical" child .  It's hard to be able to do many things that others don't think twice about being able to do.

I moved to a new area 4 years ago. I have a hard time making friends and meeting people.  It's hard for others to understand why you have to keep a close eye on your child who is 15 and looks "normal".  My son needs constant supervision so that he stays safe.  Hard to have a conversation with someone if you can't even look in their eyes because your eyes need to be on your child.

There are a couple of people at work that seem interested in getting to know Tye.  One has even met up with me and Tye and her two younger kids to go out to dinner.  It was nice that she wanted to teach her kids about others with disabilities.  Her son was a little scared of my son, he's 6 and Tye's 15 so his size alone could be intimidating for someone that age.  Her son was a trooper through during dinner trying to be nice and help my son.  For someone that has never been around another person with autism I say he did great.  We're planning another get together when it gets cooler.

If you would like to hear about other parents' experiences, read here.

Saturday, August 20, 2011

eSpecially Parents August Edition: Donna's Story

Change in family and friends is a topic near and dear to my heart.

I've always had a supportive immediate family.  I have an older sister and brother, and my parents just celebrated their 50th wedding anniversary.  After having Ben we seem to be more of a pack now (more protective of one another).  If something is going on with my nieces, it's common for all of us to show up where they are, unannounced. 

It's refreshing because if one of us doesn't have the energy to deal with the situation, the others will.  That's the ultimate support to me.  It simply means that we are always aware of the issues because of continuous communication.

Some of my family members have surprised me because I never thought they would want to have anything to do with Ben, but have ended up being the "motivated helpers" as I call them.  When I pull up, they are at the car to help. 

Concerning friends, they are few and far between.  If I can't talk to them on the phone for an hour about nothing (of course it's only suppose to take a minute), go with them on a minutes notice, or leave Ben at home instead of taking him with me, I don't hear from them.

The people I'm now meeting are more sensitive and respectful of my challenges if I have Ben with me.  They also have children who want Ben to join them.  I'm so very grateful for them.

Things are looking good.

If you would like to read more from other parents, go here.

Friday, August 19, 2011

eSpecially Parents July Edition: Elisa's Story

Loving an Only Child

Choosing to love an only child is the most difficult choice I have ever made. Years ago, I imagined myself as the mother of four boys. I have always thought of myself as a “boy mom,” the only girl in a wild house filled with male voices. We were on our way to building that “house” when Samson came. Then, his unique challenges began to fill our thoughts and alter our direction.

One day we were 40 and I had let go of my original plan. Genetics forced us to consider the certainty of other biological children having the same neurological challenges as Samson. The foster system was my original idea – open our hearts to other children and wait until God chose the one we could keep. The possibilities of it all seemed dreamy to me at first. Reality arrived soon, however, when we learned that single children were often adopted by family, and that most opportunities to foster would likely be to siblings. Combined with Samson’s needs, adopting siblings seemed much more than we could manage. I am starry-eyed and dreamy, but I can manage to glimpse enough reality to clear my vision in significant moments.

Last year, through our church, we became a host family to a young man who studied at a seminary. I went into the program with a wistful hope for a bond of brotherhood between him and Samson. Brent went north at the end of May for an internship. He has a few times made the 3-hour drive to spend weekends splashing in the backyard pool with his “brother,” and I watch Samson’s joy overflow.

Today there are three of us. Every day I struggle to “let go and let God” provide what our son will need when he is alone. I wish for the calm of believing someone will surely care for him with the same dignity we strive for everyday. The quiet in our house feels lonely sometimes. But at the end of an ordinary day, I remind myself that all is well with the little family we have made.

If you want to read more from other parents, go here.

Thursday, August 18, 2011

Camp in Review

Here are some photos from Ben's summer camp. This camp is coordinated through the Therapeutic Recreation Division of the County Parks and Recreation Department. They offer scholarships to attend this camp. Ryan and I participated in the Amazing Race, one of their fundraising events for the scholarship fund for which many of you contributed.

You can see through these photos that the camp does an excellent job of getting the children involved in all types of activities from pet therapy to swimming, and everything in between. . And when they were not busy with the weekly visits from the music therapist, horticulturalist and My Gym, they went off-site to the bowling alley, theme parks, local colleges to take in a play.

Ben was busy exploring this summer and making friends.

Tuesday, August 16, 2011

Rainbow Express

I received this letter a few weeks after Ben attended Rainbow Express at Matthews United Methodist Church:

First off, thank you so much for sharing your wonderful son with me this week. Ben really fascinated me as I learned more about him each day. I loved seeing his smile and laugh when he got excited, and although it was a wee bit painful, I laughed so hard every time I turned around and saw him innocently gnawing on my hair!

Everywhere we walked in the hallways, someone stopped us wanting to meet Ben. It might have been because of his awesome trike or adorable red hair, but once people looked him in the eyes they fell in love with him and couldn't help but tell me how cute he is.

I was surprised how well Ben was able to communicate his desires with me. I feel as though I've learned so much, not only about Ben, but about myself. Having Ben as my camper was a massive blessing. Give Ben a hug for me!


Reading this letter made my day!

Sunday, August 14, 2011

eSpecially Parents August Edition: Meg's Story

If you don't like something, change it. If you can't change it, change your attitude. --Maya Angelou

Who says it better than Maya Angelou?  I mean reallly, geesh, she is awesome.

This post is about change.  It's funny, because I have always been a huge fan of change.  You know, mixing things up, trying something new, meeting new people, travelling to new places, etc.  All these things, every single one of them is like a living nightmare for my Autistic son.  So nowadays change is something we plan, not something that happens to us. 

Changes in relationships are unpredictable and therefore a dangerous area for our family.  Since we live so far from my family, their support is by necessity, verbal (phone calls), so from a practical point of view it has made little difference.  As for friends, we have recently moved to a new area of the country and are in the initial stages of friendship with lots of lovely people who know all about our challenges, which makes things so much easier for us. 

I would have to say that the lack of reaction from family members when we shared our son's diagnosis was really the most shocking thing for us.  I don't know that any of my family members or my husband's family members actually understand what our son's Autism means to us, the way we live, the amount of stress and planning involved in even the smallest change.  I would have appreciated some recognition of the change to our lives.  I suppose they thought that making a big deal of it wouldn't help things, and they are probably right. 

I'm not sure what I'm trying to say.  I certainly haven't had the experience of losing the support of friends or family members due to my son's diagnosis because we had no support network to begin with.  It sometimes seems like we are our own floating island.  When the seas are calm, life can be really fantastic.  When the seas are rough, we hold tight to each other and wait it out.  We are our own support system and it works for us because it has to.  We don't have a choice.  We have little family nearby and we have lovely, but new friendships.  We can't change our situation, but we can endeavour to keep a positive attitude and appreciate one another.

Friday, August 12, 2011

eSpecially Parents August Edition: Changing Relationships

One of the eSpecially Parents suggested this topic for the month of August: How have your relationships changed with family and friends after your child was diagnosed with a special need?

I have known about this question for awhile and had lots of time to mull it over. I have met my wonderful, caring and true friends through Ben. He seems to attract genuine people. And luckily they seem to like the rest of his family too.

Early on when Ben was little, we were one of the first families to have children in the neighborhood. After Logan was born, there were a few more people having children and we decided to form a group called Club Family. We swapped babysitting time and planned group activities for the kids and parents. This group became my social outlet - and Ben was always a part of it all. I can only think of one time when a parent made a misinformed choice of words to explain Ben's condition, but other than that, everyone has been warm and loving toward our family.

If we did not have the supportive environment from our neighborhood and Charlotte friends, it would have been difficult for us. We are far from family. They help when they visit, but it is not on a regular schedule that we can depend or rely on.

Writing this blog has helped tremendously with friends and family understanding truly what we go through on a regular basis. I think it has been helpful for them to read about our lives and then apply it when spending time with us. It has assisted in building relationships with distant relatives and friends we do not see and gives them a way to support us - through their positive comments.

In thinking about this question, I realized of the friendships I have "lost" over the years, most of them came from some conflict between me and that person, nothing to do with Ben or his issues. When I turned 40 last year, I made the decision to spend time with the friends who respect me for who I am, ones who will lift me up and share in the role of friendship. I have not regretted this decision, or even looked back.

But ultimately in answering this question, I see that roles within families and friendships change all the time - they have to because life is always moving. It is important to reassess, and perhaps make intentional choices that are best for you and your family.

Sunday, August 7, 2011

Ends of Summer...

I will be posting again soon...summer is almost over and it is our craziest time. Thanks for being a loyal reader!

Tuesday, August 2, 2011

An Unexpected Addiction

A few weeks ago, Ben was brought home from camp without his Convaid stroller. I panicked. I kept myself together for the sake of the community worker, but I was beside myself. I mean I really came close to an anxiety attack. I called Ryan to tell him of the dilemma and he too had angry words about the situation.

Our biggest fear was that Ben would not go to sleep at night and we would have nowhere to secure him. His sleep schedule has been crazy - up until after midnight wanting to roam the house, getting into things he need not get into. Our sleep and Ben's safety were our two main concerns.

I realized, fairly quickly, that my anxiety was something to examine. I saw that we had become dependent on strapping Ben into his chair when he would not go to sleep. Perhaps this "no-chair" night would help us develop new strategies for bedtime. We made it through that night, and we have since consulted with the neurologist. Time release melatonin for Ben is working some of the time.

And as I write this at 10:30pm, Ben is still wild, loud and climbing from chair to couch and back again...but I have not "put him in the chair" just yet.

What have you become dependent upon? Have you developed an addiction to a piece of equipment, medicine or routine? Could you do without it and survive? Is your dependence stopping your child's independence?

Monday, August 1, 2011

Magic Marker Monday: Paper Puppets

Ben's 8th birthday was celebrated with his cousins, friends and grandparents at his favorite hangout - Smelly Cat, our local coffeehouse. The kids were able to make cats or kitten puppets with various art supplies and paperbags. Ben got to eat his cupcakes and drink lots of chocolate milk - everyone was happy and content...for awhile!

Drop by on Mondays to see what crafty things kids are creating.