eSpecially Ben

 We met many characters along the way. Hugs were abundant.   A Guinness World Record could have been set with this hug. And if you are wondering who this is...so am I.  Logan was concerned that Santa was here and not making toys in the North Pole. Santa told Logan that he was in a supervisory role and had elves to do the work. Logan still thought he was cutting it too close to Christmas. His disappoval was evident. Notice Ryan's hand around Mickey's waist. Ben learned quickly that the characters hands were great to chew on.  Ben only had eyes for Jessie. Poor Woody - he was intent on giving Ben a big hug.  Who is the happiest in this photo?  For more information on the Ace & TJ's Grin Kids Organization , check here .

Photo credit goes to Angus Lamond , the photographer on the Ace & TJ's Grin Kids Trip 2011 20 families were invited this year on the Ace & TJ's Grin Kids Trip 2011.  Families were from North Carolina, Virginia, Alabama and Tennessee. We did not know each other before we started on our journey, but by the end of the 5 days in Disney, many connections and friendships were formed. Although we did not stay together as a group all day, everyday - it would be impossible with over 100 people - it was great to see another family on a ride or share a spot on the parade route. Our common denominator, raising a child with special needs, was a good conversation starter, and lead us to other topics, like our work, family life and outside interests. It was a relief when, as a group on the plane, bus or restaurant, and Ben was yelling or making loud noises, that not one person was looking at us in a way that said, "Could you please quiet that child?" We were al

Photo credit goes to Angus Lamond , the photographer on the Ace & TJ's Grin Kids Trip 2011 .

Just got back from the Disney Orientation meeting for the Grin Kids trip. At one point, I had tears in my eyes and we are not even there yet. There may be a flood when we actually arrive on Wednesday. It is amazing what this organization has in store for us. Every detail is planned out to make it simple to travel with our children with special needs. We drop off our luggage at the airport and do not see it again until we get to our room. Meals, transportation, park passes, special events, souvenirs, snacks...anything you can think of is all taken care of for all 20 families. The Ace & TJ Radio Show and Grin Kids staff will be updating their Facebook and website pages daily while we are in Disney World. If you want to follow along, here's where you can find us: Ace & TJ Facebook Grin Kids Ace & TJ Radio Show Ace & TJ will be interviewing families throught the trip and playing the responses on their morning show. Listen from 6am-11am, Monday - Friday

A Walking Machine - that's exactly what Ben has become over the summer.

We've had a bit of a bumpy start, education-wise, but things are good now.  Actually my son was just honored at his mainstream school assembly as the 'Star of the Week' for his class, as he knew all his letters and letter sounds.  This is something I was not expecting.  Of course I know my son is super clever, but 2 weeks into the school year I anticipated tantrums and being called to come and bring him home, not awards!  But I feel this is proof that he is in the right place.  His needs are being met and he is content.  That's all I have been praying for and that's what we've got! Let me take you back.  You see, because my son has trouble with new people, places, routines, and the like I carefully planned our cross country house move 18 months before he was to start school.  My intention was to settle him in our new house, and a new pre-school with children who would be attending the local (very sweet, just 80 students total) school to prepare him for the smo

School has been nothing but a bad experience for us.  You have teachers that have no idea how to work with a child with autism, (although it's supposed to be an autism class).  Most aides that are in the class don't have much of a clue either and most have very minimal training in how to address the behaviors and teach.  We've experienced school for Tye in 3 different states, FL, NY and NC.  It's been awful in all those states.  In NY, they did offer more services, which I had to fight to get with a Special Ed lawyer's help.  He did get really good after school services, like ABA and a behavioral consultant plus additional ST and OT.  Other children in the same school district didn't receive the same level of services because school districts don't give anything without a fight.  The public school system in NY was very poor.  If there were openings in the private school setting the district would have sent him there, but of course there were no openings.

This month the writers for the eSpecially Parents series will focus on their child’s experience with schools and the educational system. I have written a lot about Ben’s experiences at school. For the most part we have been very happy with his teachers, staff and academics. In preparing to write this post, I thought about why we have had good experiences and what went wrong when we did not. Here are three areas that I think help to summarize why we continue to  be happy with the public school system. Expertise - I know that I am an expert on Ben because I have known him the longest and involved with every detail of his life, but I also value that the people working with Ben are most likely experts about how to best teach him. They are trained in educating children with needs such as Ben and have special techniques that work.  I begin with the assumption that they went into this field because they have a love for this particular profession and the work that they do. Rela

Remember those words, "Left Back" when you were in school. To me it meant a kid did not do well in school and had to redo the grade again. The negative connotation of that phrase is still strong in me. We made the decision to "retain", the politically correct word for being left back, Ben for the upcoming school year. He is repeating 2nd grade. Ben will be able to attend school until he is 21 years old. It was recommended to us that Ben should repeat a grade three times - once in elementary, middle and then high school, spreading out the years. At first I was upset by it. Now that Ben is in class and doing well, I have not given it another thought. It is best for him and that is what is most important. Anyone have thoughts about retaining a child during his or her time in school?

Ben ran down the pier in his walker, until he hit this feirce wind. A few seconds of it and he turned right around!

Two years and lots learned. Here's a shot at just a few of those lessons: Perspective - Each time I record a piece of our family's history here, I am able to see the growth, changes and patterns that are a part of our life. Today, when I write about Ben's amazing progress with walking, I can compare it to a year ago when our biggest concern was seizures and finding the right medicine to control them. Ben's walking had taken a "step backward" and I had not even realized it until he started walking so well in May after a change in medication. A year ago, I was distraught over Ben's school closing, and now he may be at a place that will provide him with as much, if not more, opportunities for growth and independence than his old school. Introspective - Keeping up with posts for a blog is time consuming. To be consistent with current topics and regular posts is difficult. Finding the right topic to write about, ones that will interest readers, i

 This is a letter I received last week from a company where Ben gets his orthotic braces made. I had been frustrated with the entrance to the building - no handicap accessible doors - and said so in their patient satisfaction survey. I am glad for this response and really appreciate the office manager writing to tell me about the changes being made. Advocating is a tough business and it does not always get you the results you want or expect. And sometimes, people do not react the way you think they might - both positively and negatively. I am checking this one off as a "Success."  

The photo above is just one from the weekly CD we receive from Ben and Logan's Sunday School teachers, Mr. Terry (photographer) and Mr. Jim. We also get an email telling us about the happenings within Sunday School and lessons to be studied for the following week. The emails, photos and updates are all wonderful, but they do not convey the love, unconditional support and pride that Mr. Terry and Mr. Jim have for Ben. You get that from talking with them. It brings tears to my eyes just thinking about how much Ben is loved every Sunday when he walks through those doors. This love carries through to the other kids in the class - the other boys and girls treat Ben with respect, love and friendship. As for Ben, he joins in the class, sitting, listening, eating and occassionally taking a break by walking down the hall to visit his little brother Sean, and sneaking a second snack from that wonderful Sunday School teacher...but that's a post for another day.

We have talked potty talk a lot on this blog - from toilet training woes to Medicaid paperwork nightmares. It looks like we may have some relief by next week. Okay, I will stop. But it is making me laugh. Long story short, we have been borrowing a Rifton Blue Wave Toilet for Ben from the NC Assistive Technology Program since last November. They have been more than flexible with letting us keep the toilet over our allotted time. Last week, I received an email asking us to return the toilet. I knew that all my favors had been called in, my husband had done his diplomatic best and it was time to bring it back. On the exact same day, Ben's new OT, told us that one of the families she works for has a brand new Blue Wave Toilet in their garage, unused. They got it for their son, but it was not what they needed. Hopefully by the time you read this, Ben will have his very own toilet. Thank goodness for the kindness of others to provide for the small comforts in life.

If you give a three year old the responsibility to set the table, you could get beautifully sculptured napkins.

Check out all the kids who are going to Disney with us. They are listed on this page: Meet the Grin Kids

This is just one of those funny things that happen in life - a story you tell when someone is willing to listen. Many months ago at Sunday School, someone opened the door to the room quickly and the doorknob hit a framed piece of artwork, breaking the glass. Although neither Ryan nor I had anything to do with it breaking, Ryan decided to take the artwork home to get the glass fixed. Ryan took the artwork to his office where they can get glass relatively cheap. He leaned the print against the desk, and for the first time, had a good look at it. So did everyone else who came into the office. Everyone’s reaction was the same, “How Awful!” Mine was, “What’s with all the nipples?” At the same time, Ryan realized the frame itself would have to be dismantled for the glass to be replaced. This was turning into an expensive project. Ryan and I decided that perhaps the piece was stuck behind the door for a reason. After all, the church was redecorating. I called the

Natalie with her sister. The moment Sophia came into my life, I completely changed as a person. Naturally my relationships with family and friends changed too. This is an area in my life that I am still trying to figure out. It can be hard to find your place with friends and and even some family after a life changing experience. They remain the same but I have forever been changed. At times, it can be an isolating experience. People you once felt you could relate to, you no longer do. Natalie with her parents. There were people that barely acknowledged or asked about Sophia. Others that offered no support and no compassion for what we were going through. Needless to say, I have limited to no relationship with those people. Then there were people I expected to be more supportive but, for some reason, were not. It can hurt but I try not to take it personally. I have had to let go of some relationships and expectations. I may be partly to blame for some of this. I am

This is a letter I received this week from one of the Pay It Forward leaders: Hey Everybody, Here are the details and the sign up link for the "World's First Ever Pay it Forward Experience" happening here in Utah in Late October. We have an amazing group of speakers coming in such as Catherine Ryan Hyde (author of Pay it Forward), Adrianne Schmidt (creator of Karma Experiment with over 1.2 million followers), Bob Littell (creator of NetWeaving - www.netweaving.com ) and Hannah Taylor (Founder of Ladybug Foundation - www.ladybugfoundation.ca ) The event takes place on the 21st - 23rd of October and we will start it out early Friday morning with a BIG pay it forward project in the community.  We have teamed up with the Mayor and she has requested we "Paint the Parks".  Hundreds of us will converge on the city parks and make them look amazing for the Community.  We will also be doing an event called "Blanket the City" with the Roadhome Homeless She

I lay in bed this morning thinking about why God chose me to be Ben's mom. It could not have been for my patience because I surely did not have a lot. Nor could it have been for my empathetic nature because you would be hard-pressed to use those words to describe me. My mild temper was non-existent, so surely not for that. But wait, that was me before Ben. I do have a little patience, some empathy and my temper can be controlled, now. Perhaps that's why God gave Ben to me. So I could grow. Why did God choose you to be your child's mom or dad? Where have you stretched yourself so that you can be the best parent for your child?

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. July 2010 Ocotber 2010 March 2011 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 .

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 rea

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 wa

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

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

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

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 th

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.

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! Jaclyn Reading this letter made my day!

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 e

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

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

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

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! Magic Marker Monday is part of 5 Minutes for Special Needs . Drop by on Mondays to see what crafty things kids are creating.

I am a mother to four year old boy/girl twins. I have a 20 year old step-daughter who has never lived with us and who we rarely see. My son was diagnosed with Autistic Spectrum Disorder in November 2010. From a very early age, my children were, as the English say 'chalk and cheese' - as different as night and day. My daughter was happy, outgoing, easy to please and to play with, and constantly wanting Mommy's attention. My son was happy, but more content playing on his own. He actually taught himself to walk and now he is teaching himself to read. My daughter has grown up listening to and dealing with my son's tantrums and repetitive play scripts. In order for her to have a playmate in him, she has had to learn to 'read' her brother and play his way, which is sometimes very difficult. I know we often expect much more from her than we do from him and this bothers me. I find myself scolding her for not telling me when he's getting into something or