Wednesday, September 28, 2011

Special Exposure Wednesday: Walking Machine



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

Monday, September 26, 2011

eSpecially Parents September Edition: Meg's Story

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 smoothest transition possible into primary school (elementary school to those of you Stateside). 

By October of 2010 everything was coming along, my son had settled at home and into the pre-school, visited the primary school on a number of occasions and was comfortable with the children and their parents....score!  I submitted school preferences at the end of October and in November my son was diagnosed with Autistic Spectrum Disorder.  I was told not to worry about my school choice, and to proceed as normal, so that's what I did.  Never did it enter my mind that the local school, the school we moved to prepare him for, the school where all the children he knew would be going...would not be our allocated school. 

In May I was informed of the school my children (I have twins) would be attending in the fall.  I was beyond shocked.  The kids had been allocated to a larger school about 5 miles away in a village that we never go to, and where we knew no one.  Nightmare!  Immediately I was on the phone, tears in my eyes asking if anything could be done, that my son was a special case and that we had been working for over a year to prepare him for the local school.  I was told to appeal.  I did so and I included masses of evidence and reports from all the professionals who had been working with my son and knew about his anxiety.  It didn't matter.  Nothing I said made any difference.  There was a protocol and that was that, no exceptions.  I went through emotions associated with a loss - anger, bargaining, depression, and acceptance. 

Then a thick brown envelope arrived in the post.  It was the draft copy of my son's Statement of Special Educational Needs!  Although a huge relief for me to know that my son would definitely get the help he needs at school, no matter what school he attended, it put pressure on us, as it's finalization was time sensitive.  I had to name the school I wanted him to attend within 10 working days.  I contacted the Appeals team once again and asked them to make a decision, any decision, just let me know where my daughter would be going to school so I can put the same school on my son's Statement.  No help whatsoever.  I then contacted the school we were appealing to, and made an appointment with Head Teacher and the Special Needs Co-ordinator.  I planned to ask them if the school could support my son's needs and whether there was any chance my daughter could win the appeal to be included in the Reception (Kindergarten) class.  I figured I would leave the meeting knowing one way or another where the kids would be going to school.

At the meeting the Head Teacher apologized for the stress and strain of the appeal and offered us the places we needed!  What a relief!  It was now the end of July and the kids were due to start school at the beginning of September, but it was settled and we got what we had been fighting for.

So both my children ended up at the school we planned for them to attend and they love it.  They are together with all of their friends from pre-school and loving this new chapter in their young lives.  I am so happy that I refused to give up and persevered through months of difficulty.  It was all worth it, every minute of the stress is worth the smiles on my children's faces and knowing they are where they belong.

p.s.
One thing I was able to do, which was a huge help was to meet up with the support worker assigned to help my son. I invited her to come to our house over the school holidays for a cup of tea and a cake once a week.  This gave us an opportunity to get to know her as well and gave her the chance to get to know my son a bit before school began.  It was a win-win situation. 


Need to read more from the eSpecially Parents Series - start here.

Sunday, September 25, 2011

eSpecially Parents September Edition: Paula's Story

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.  At least he got the after school services where he was able to learn because the people were actually qualified and new what they were doing.

I've found that in order to get your child the education they should have and deserve you can't get it without constantly being on top of things and learning how to work with your child yourself. When Tye was first diagnosed with autism when he was 2, we spent $35,000 in one year, to have him do ABA therapy with staff that were extremely knowledgeable.  I was also trained in how to teach him myself to try to keep costs down and to help Tye.

He's 15 years old now.  It gets so tiring and frustrating to always have to be on top of school and trying to be sure he is well taken care of.  He's learned nothing at all in the public school setting.  So sad, but true.  He's only been able to learn when he was home schooled when he was younger and the after school services in NY. 

My husband and I despise the school he goes to.  We always hope for staff that know what they are doing and are capable of teaching him.  In NC they have to teach according to grade level regardless of the child's level of understanding.  He's in 10th grade learning about 10th grade material.  He can't read, write, do math and has major issues with communication.  I don't know why they can't teach him things that are relevant to him, functional skills, independent skills, leisure skills, social skills, etc, etc. 

If we could afford to home school him we would in a heartbeat.  He has so much more potential than what they are pushing him towards.  IEP goals are only worked on for a very short time in the day since they have to teach the grade level academics first. 

If only we had enough money to get him the level of qualified people working with him teaching him things he really needs to know in life.  Not about the layers of the earth or about paramecium's or other irrelevant material. 


First time reader for Especially Parents Series? Catch up here.

Saturday, September 24, 2011

Especially Parents September Edition: Schools and Education



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.

  1. 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.
  2. Relationships – Building positive relationships with everyone at the school helps when things are good, but also when things get rough, I already have something in place. Communication is easier when trust has already been built. It has to be a partnership between our family and the school - everyone has a difficult job to do and if we consider ourselves as a team, it can only help Ben.
  3. Involvement – I find a way to get involved at the school that Ben attends – anything from PTA to helping the teacher with the newsletter. Even if I am too busy to volunteer, sending emails to stay in touch is helpful too. Teachers have a tough job and any help from a parent is usually welcomed. When they request information or supplies, I make sure that I do my part in a timely manner.
When I started writing this post, all was good with Ben's school and class. Just days ago, I found out that Ben's teacher is leaving due to personal reasons. My biggest concern, and a time I can recall when Ben's school experience was terrible, is when there was inconsistency with staff. Although it appears that they have a plan in place for staff, my radar is up. I will need to be more aware of Ben's reaction to the school bus's arrival, what information is sent home and stay in contact with the principal. Although I am not a fan of surprise visits to the school, I will do what is necessary to feel comfortable with Ben's situation.

What things have you tried to help your family have a good experience with the school system?



If you have not seen the eSpecially Parents series, get more information here.

Thursday, September 22, 2011

Left Back

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?

Wednesday, September 21, 2011

Special Exposure Wednesday: Fighting the Wind


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

Tuesday, September 20, 2011

2 Years and Counting




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, is not an easy task. But I love it. Since starting this blog, my brain is always on alert for something interesting to write about. And I am a thinker, I have to mull things over in my brain before writing. This introspective piece helps me dissect situations, gaining a better understanding of the experience.

Connective - The family of bloggers and readers is an amazing one. Everyone has their own style, stories, opinions and voices, yet we still find a way to connect to one another. It should never take the place of face-to-face friendships and relationships, but sometimes connecting with someone across the world through an email or post about a similar experience is what we need at that moment. The feeling of "I am not alone in this world" is an important one.

Monday, September 19, 2011

When Advocating Works



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."





Sunday, September 18, 2011

Mr. Terry & Mr. Jim

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.

Thursday, September 15, 2011

Something New, Something Blue, Something Borrowed


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.

Wednesday, September 14, 2011

Special Exposure Wednesday: If you give a three year old...



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

Tuesday, September 13, 2011

Meet the Grin Kids



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

Monday, September 12, 2011

Appreciating the Finer Things in Life


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 church to find out what to do. I was told to go to the person responsible for decorating, but after several attempts, I never heard back from him. The artwork sat on our back porch for a while. I came close to throwing it out, but something told me that I should wait.

Then, several months later, while in line at church to say hello to the pastor, I started up a conversation with the woman behind me. We discussed the person playing the piano, and I quickly realized that he was the decorator person I had been looking for. I was overjoyed and began telling her about this strange piece of artwork. She quickly asked if it was a picture of the Last Supper. I said that I supposed it was. She then asked if it was a Salvador Dali. I said I did not know, but slowly, a dim light went off in my head, the nipples and weirdness of the piece were making sense.

In the back recesses of my brain, another story popped into my head. The time when I ordered orange juice at a fancy restaurant, and it tasted terrible, not like the Tropicana from concentrate I was used to. I called the waiter over and complained about the taste, only to be told that it was freshly squeezed.

With fresh squeezed orange juice and Salvador Dali swimming around in my brain, this woman calmly said, “I am the one who donated that artwork to the church and I have been wondering where it was.”

Okay, there are over 150 members at church. I had to stand next to this woman and have a conversation about this picture? What are the chances?

As I backtracked and apologized profusely, she put me at ease and said simply, "God meant for us to have this conversation so I could get the picture back." Thank goodness someone in that conversation had grace and tact. Whew!

After taking my foot out of mouth and washing it down with OJ, I went home and brought Salvador Dali’s Last Supper back to the church.

Saturday, September 3, 2011

eSpecially Parents August Edition: Natalie's Story

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 horrible at asking for help and support. A lot of people ask me how they can help during stressful times. My response is usually that I don't need any help, even if I do.

Sometimes I have so much going on that I can't even stop to think of what I need. The people that are are the most supportive and helpful generally don't ask, they just do. It's important to recognize the incredible doctors, nurses, therapists, aides and sometimes complete strangers that have touched our hearts because of sweet Sophia. Without Sophia, we probably would not have met them and their support continues to
amaze us each day.

I have gained new and very important friendships with other special-needs mothers like me. This is where I feel most at ease. They understand me on a level that most cannot. I can talk about my feelings and what I am going through on a much deeper level. I hope to develop more relationships like this in the future. I have had so many different reactions from friends and family but most have been very positive and supportive. They have been there for me regardless of the changes in my life.

During Sophia's surgeries and recoveries (our most stressful times) many friends and family send us uplifting and encouraging messages. I really love reading the messages, sometimes it is all I need to stay strong. We normally come home from the hospital to a clean house (thanks mom), flowers, get well cards and several days worth of homemade meals.

With the help of family and friends, I've learned what it takes to get through the hard times - strength, courage and a positive attitude. We are so lucky to have these people in our lives and we appreciate their support beyond words.

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

Friday, September 2, 2011

Pay It Forward Conference

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 Shelter to make sure they have enough Blankets for the cold Winter months ahead.

We hope you can join us physically but understand if you can not. For those who can't make it we still want you to be a part of this amazing event with us so we will be broadcasting this event LIVE, all 3 days of it!  You will be able to watch it from home, or maybe at your office or maybe at your school with your classmates.  This option is going to make it so people from all over the world will get to see this world changing event but they will get a little extra as well. How about some behind the scenes access and backstage interviews with the speakers? This will be exclusive to those viewing via the webinar from all over the world.

Money will be going to the Ladybug Foundation, the Pay it Forward Foundation and the RoadHome Homeless Shelter so come on out and join us.  Here is the link to sign up - http://zermattresort.com/events/pay-it-forward-event/

Thanks for listening and hope you can join us on this World Changing Journey.
Charley

If you have a way to promote this via your website, Facebook, etc. please do so. The more people who know about this project the better. Thank you.

Thursday, September 1, 2011

Why Did God Choose Me?

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?