Thursday, March 23, 2017

A Letter to My Mini Human

It has been two years since your diagnosis of Autism Spectrum Disorder. In some ways it's hard to remember our lives before that time, but in other ways mommy still has trouble believing this is real. But I continue to be so very proud and blessed to have you as my child. Mommy even decided to get a permanent symbol on my wrist to always remind me, even in difficult times, of my purpose which is you my precious child. 
As I reflect over the past year, I am in awe of you sweet boy. You had several bad falls this year. The first you fell on the playground at school. You still have a scar above your eye.

In July you had another bad fall resulting in your second broken arm in a year. This time baby boy was definitely worse than the first. You tried so hard to be tough but it was a terrible break and you ended up getting your first ambulance ride with mommy to Vanderbilt to have surgery while Daddy followed us in the car. I think I learned I had some mad gymnastic skills in high heels after you screamed my name and I somersaulted into the bed. What a site we were riding in the hospital bed together through the hallways of the hospital. Mommy and Daddy were so worried about you but knew you would tackle this challenge like you have everything else. 
You started your second year at Whitehall Pre-K Center. 
You have worked so hard at school and with your therapies. You have a total of 7 different therapy sessions with 5 different therapists in addition to going to school. To be honest Bro sometimes I have trouble keeping up but you never do. We have been so proud all that you have done. Mommy doesn't know of another person, child or adult, that works as hard as you do. I still wish you didn't have to work so hard, so young and you were able to just be a kid but that is simply not our life. You also had to adjust to having two homes when Mommy and Daddy decided to no longer be married. I hope you know precious child that this was not your fault. I have hated how this transition might have added to your stress and altered your routine. I promise you sweet boy, in all that we do Mommy and Daddy will always put you first and even though we are no longer married we three are still a family and we both love you so much. 
It hasn't been all struggles this year. We have had lots of fun. Here you are at Halloween as the coolest astronaut.
You have found your passion of "hiking" and "camping" with Daddy. Don't tell Daddy but I think you were even tougher than he was the first night you slept outside in the tent. Daddy thought you would want to come inside from the cold but you, just like Daddy, truly love being outside. 

While you love playing outside with Daddy, you love dancing and listening to music with Mommy. My heart melts when you hear a song and say "Dance with me Mommy."
We have gone through a lot this year baby boy. I wish I could promise you this year will be easier but I can't. I do know that I will continue to fight for you and push you. And when you grab my hand and ask me to dance, I'll always say yes. I love you sweet Brody. 

Wednesday, March 8, 2017

An Update on School

So many of you have been amazing to support Brody and always ask for updates on his progress. As a brief update Brody’s school (he is in his 2nd year of attendance) was severely damaged due to roof damage at the beginning of this year. What seemed like such a negative blow turned out to be such blessing in disguise. His school system had consolidated schools last year and as a result one of the elementary schools was sitting unused. It is truly like God had his hand on this because the new facility truly meets the needs of the students so much better than the rest. 

Brody started at Whitehall Pre-K in August 2015. According to the specialists at Vanderbilt, at that time he tested in 1-10% percentile of children. His highest developmental score was in the 19th percentile. Those scores meant that at Brody’s highest learning domain, 81% of children his age were functioning higher to him. 

Here is a photo of sweet Brody at his previous school before we enrolled him into the public school system. All of the children are happily smiling at the camera, while our sweet Bro is somewhere lost in his world.

Through his school he receives Occupational, Speech and Physical therapy. His classroom teachers, therapists and entire staff at Whitehall work as a team to help him reach his potential. Through their never-ending hard work Brody has managed to close the gaps between his chronological and developmental age. 

He even made hist first best friend Josiah!

But could more have been achieved if the therapists and staff had better resources to work with the children?

At the previous school location, his occupational therapist and physical therapist shared a 13 x 11 space in the gym that also served as a closet for storing gym equipment. When you are working with gross and fine motor skills you need the ability to move and have the space but yet we sent our children to a closet to try and get the help they need. 

His new facility where the school is temporarily housed has the space for the therapists and staff to perform the work they need to do and are required by law to provide for our children. The gymnasium even has a rock wall where the physical therapist can work with children, like my son, to improve their functionality. Remember in one year, Brody had a major fall at school which he still bares the scar above his eye and a fall at camp which resulted in emergency surgery at Vanderbilt. 

So the simple question that so many are asking is IF we have an unused school building that better serves our students why would we not make it our permanet home? 

The pre-K center is NOT a zoned school. This means that if you have a Pre-K child with special needs in order to access therapies YOU MUST attend the Pre-K center. It does not matter if you live in Three-Way or Bemis…you have NO OTHER CHOICE but to take your child to the Pre-K center. Some have made the point that moving to the new facility would be inconvenient for the families that lived close to the previous location. I would ask why was location not an issue when it was not convenient for families like us to drive out of the way and for an extended period to attend the school. The previous location was VERY inconvenient, however it is not about what is convenient for us as parents but rather what best suits our children. 

The new facility has space to add additional Pre-K instructors, that the school desperately needs. Right now the school is at capacity in some classrooms and therefore there are students that are not able to attend. Why is it important to make sure the school has the ability to grow? By law, if your child is at Pre-K age the school system must provide the therapies and instruction for your child. It is not just the right thing to do but by law but then there are also federal mandates on classroom sizes, etc. 

Some information about the school:
It houses 18 classes - 11 are funding by special education
268 students attend the school, 108 are receiving special education services

During the meeting last night, I became frustrated when it was suggested to survey parents on what they preferred for their children. Someone said I used the word they referring to the voluntary pre-K portion of the school and that separated the school. But the school absolutely has two SEPARATE components so yes one group can be referred to specifically. The first “they” is the VOLUNTARY pre-k which means you CHOOSE to send your child there. There are other pre-k programs in which your child has the ability to attend Yes many families that attend are lower income so it may not be financially feasible for them to attend a paid program but the fact remains their child is able to attend those programs, there is a choice. Also, there are many  families that attend that are not low income. The second “they” is the DEVELOPMENTAL component of the program which provides the special education services. We do not have a choice in another pre-k program if Brody was going to receive his therapies and special education. It is not about money or where we live, we have NO other choice. So yes, there are two “they(s)” both equally important but one group we must remember has no other options and we are legally obligated to serve them so we must simple take convenience and school location out of the conversation. 

We were the parents that removed Brody from one of the nicest private schools in our county. We did this without the private school asking us to do so. We removed him from that school and enrolled him in one of the oldest school buildings in our county not close to our home. Why did we make this choice? Because it was not about what WE WANT but what HE NEEDS. 

The staff and therapists, that are the experts in this situation, believe the students are better served at this new facility so it is very hard for me to understand why the decision is unclear. We should listen to the experts advise us on how we can best serve the entire program, voluntary or developmental. I have prayed so much on this issue and for the children and staff at the pre-K center but this morning I feel defeated and not sure I have any more “fight” left in me. 

Tuesday, December 27, 2016

The Year of $%#! and Bad JuJu

From recent social media posts, I gather that many of you are feeling the pressure and strain from the passing year. I definitely share in the sentiment that 2016 was a rollercoaster of a year filled with ups and downs. As I think about all that has occurred over the past year and where I was 12 months ago, I can’t help but feel like 2016 was the year of bad juju.

In my life if there was one word I would use to describe the year, it would be transition.

Professionally, I moved into a new role which has presented many challenges but also great opportunities. I am grateful for those that have supported and encouraged me and for the amazing group that I work alongside each day.

Personally, where to start? There is no way to sugar-coat this so here it is. I got divorced. I hate that word, divorce. It sounds demeaning and depressing. Ugh! But alas that is what occurred. I will not go into specifics because to be blunt it is no one’s business, except ours. I will share that there was no one reason, or some scandalous occurrence just a decision we reached together. When we made the decision in August we vowed to end our marriage together. I’m sure that sounds odd to many, but we entered our marriage together so why wouldn’t you try to help each other through its end? In a way, he is the only person that knew what I was feeling and going through. Divorce is awful, whether it is mutual or not, we just didn’t see a need to make it worse for each other. One vital  aspect is that with every decision, we tried to always put our son first. I am proud to say we have done just that. We have seen too many bitter and nasty divorces where children are involved. Brody was and remains our top priority. We are both thankful for the friends and family that just supported us and didn't question an already very difficult decision. I know some may be shocked to learn our news and although it was not a secret, Bill and I have been very protective of each other. I even let him read this before posting out of respect. From going through this process, which included moving to a new home, it has been emotionally draining. But we have done the best we could with the situation and as Forest Gump famously said, “That’s all I have to say bout that right now.”

So 2016…you kinda sucked. Please move along and take your bad juju with you. I am welcoming 2017 with open arms.