eSpecially Ben

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 ...

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 cour...

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 ...

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 ...

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?