Roots and Wings

 

A little over twenty-one years ago, I was thrust into a world where even if you see it coming, you can't prepare for it and if you don't see it coming, you can't even imagine surviving it. I had a baby that was only 27 weeks along gestationally and due to a placenta previa, his birth was both traumatic for him, and also life-threatening for both of us. To put it simply, both his and my guardian angels were working overtime that night and I am sure, they had to call in reinforcements. His entrance into this world, however, touched, and dare I even say, changed, all who worked on him and loved him, and all these years later, he is still having that effect on all who work with him and love him. 

Of course, I am referring to the Incredible Mr. David.

Funny thing, but when you are focused on certain things in life, and I mean truly focused, you don't often have time to see the forest for the trees. You become pretty obsessed with where your focus lies, and you can't hardly see anything else, including the passing of time. I just realized the other day, that for the last 21 years, I have been extremely focused on an almost single-minded in the upbringing of David, and I have not properly prepared myself for him to hit one of the biggest (and maybe for him THE biggest) milestones of his life. David is graduating from high school tomorrow, and I am so not prepared.

 

Yes, of course, I knew in theory that graduation was on the horizon, but I never focused on the reality because there were just too many variables to allow myself the inevitability of such a milestone. Instead, I stayed focused on the day-to-day, especially when the day-to-day often held challenges that might impede David from getting to that coveted milestone. 

For those of you who know and have followed David's story, there have been no guarantees in life for David since he took his first breath. For those of you just meeting David, I invite you to go back and read the past blog pieces here. It has been a bumpy ride at times. In essence, though, David was born extremely premature with many health issues. He was diagnosed with Cerebral Palsy and a list of lifelong chronic issues that had the potential not only to hold him back but also to take his life at any time. His rather rough entrance into this world, ended him up in the NICU for five months, each day more precarious than the next. So many times we were warned that the likelihood of him surviving, let alone going home was nil. Miraculously though, he did come home. 

Not long after David came home before he even got to truly know his dad, we lost his dad to a brain aneurysm and from that moment on, it was me and only me left to take care of him and ensure that he not only continued to survive but also to thrive, and over these last twenty-one years, that is all that I have focused on. Some of my efforts have been better than others, but through it all, here we are today, on the cusp of him becoming a high school graduate. It is almost overwhelming to look back and see where we started and to now gaze upon where we are in this moment. 

Through the years, I have had so many people say, "Lisa...look at what you have done," or "He wouldn't be here without you." The truth is though, that while I may have given him roots, so many others have helped him grow into the strong young man he is, and let's not forget David's own tenacity and strength. He started fighting the moment he was created and to this day, he has never stopped. 

The day I lost my husband, I thought I had lost everything, but most especially, my rock and support where raising David was concerned. A year later, I lost my mom (David's biggest fan next to me) and it was then that I felt truly alone. How had God entrusted such a soul as David with me, and left me to do it all on my own? Of course, He had not left me to do it alone. I soon realized that I had friends who would become family, along with therapists, doctors, and even complete strangers who would become friends step in and step up at times when I needed them most, whether I realized it or appreciated it at the time. 

David started in our local primary school at 3 years old. At the time, he pretty much just laid on his back and other than some rudimentary attempts at crawling, he really didn't do much. By the time he left the primary school, he had a wheelchair, a walker, and he was walking all over the school and had begun to learn to communicate. This was all in great part due to his teacher Brenda Martin, his speech therapist Micki Mason, and his Physical Therapist Valerie Wondra, not to mention all the amazing para's who worked tirelessly with him (Diane Ellis, Terri Lander, Rita Snider, and so many more). 

Once out of the primary school, we had our ups and downs with school, mostly because from day one I was told that since David was non-verbal, I was his voice. I had to make sure his needs were always met and that his voice was heard, and I took this job very seriously. Because of this, I was not a favorite of every school administrator, nor every teacher or para that crossed his path. There were times when I would walk into a school and see a teacher or admin who would literally turn and walk the other way to avoid me. Through it all though, he once again came in contact with some amazing people including his long-time para Niki O'Daniel, Sandy Phillips, and Cindy Ramsey, just to name a few. 

It wasn't until David hit high school though, that the changes really began. He was originally blessed with a teacher named Mallory Ashworth. Mallory met David daily with joy and was constantly willing to go above and beyond to help David succeed, whether this meant getting extra training or going to a P.T. appointment with us. She was amazing and she will never know the gratitude I have for her care and love of David. Then, a year into high school,  there was a complete change over in David's teachers and para and boy did he hit the jackpot. He had Alisa Pittman as his teacher who refused to see David as anything other than amazing and capable and Tony Shrubshall as his para who has given him the ability to soar in both the classroom and in life. Oh, the places he has gone since that day. He has learned to be so much more independent, and self-sufficient and he is also getting pretty proficient at sign language. He also has other amazing staff working with him such as Carol, Micki, and our beloved friend and bus driver, Bob, just to name a few. Without all of these people working so hard to help him succeed, I simply don't know where we would be.

 

Let's also not forget all of you who read David's Facebook page and mine, as well as this blog, who pray for David, cheer David on in all of his accomplishments, helped us to save his home, and most importantly, those who see him as the amazing individual he has turned out to be. 

So, as I said, I have given David roots, but all of you have given him the wings to fly and become the man that no ceiling could ever hold in. 

Now, tomorrow, I will go and watch my youngest, the focus of my last 21 years, do something that I dare not even dream he could or would. Tomorrow, David Elam will graduate and suddenly, the woman who always remains stoic and unaffected (except in a crisis), is about to fall apart. I am overwhelmed looking back on the journey and reflecting on all who have been there along the way, both through the amazing and the not-so-amazing. I find myself unbelievably grateful and even a little terrified as both he and I will be starting a new chapter in our lives. 

Thank you all for your kindness, prayers, understanding at times, and your constant ability to let David and I know that we are not alone and that we not only have friends and family behind us but also a wonderful community of individuals who always seem to have our back and cheer us on regardless of the current crisis. Thank you just doesn't seem adequate....now does it? 

Fear not, there will be more. As I said, we will be moving into a new chapter, with new stories and insights and I will keep you posted both here and on Facebook. So until next time..........

HAPPY GRADUATION DAVID!

School, Teachers and the Special Needs Child

This day certainly seemed like a better day in theory than it is turning out to be, however.....maybe we are just getting all the yucky parts out of the way early and the rest of the day will be bright and sunny! Yeah....I don't make a very good Pollyanna do I?!

I really wasn't sure what I was going to post about today as David is doing pretty well. We have got his seizure meds adjusted and he seems to be in a better mood now. We also have his Physical Therapy(PT) underway and he is doing very very well with it. There is really not much new here in Davidtopia to discuss, and that is a good thing. Therefore I was feeling at a bit of a blog loss....when I got a message from a lady telling me about her young son who among other things has seizures and she is having issues with a teacher taking this seriously. My blog just wrote itself at this point.

Not all special education teachers are created equally!!!! If you are a sped parent.....please commit this to memory. In the course of your child's education, you will have teachers that are simply amazing and teachers that you wonder how or why they ever even became teachers. David has had both and honestly and fairly, he has had more good than bad, however.....the bad ones do seem to overshadow the good ones. Sad...but true!

When your sped child starts into school, they usually will start early. David was started at 3 years old into the Early Childhood Education program at our school. At the time, they had mixed classes with sped kids and gen ed kids. The program was amazing because the teacher behind it was amazing. The belief was that if you mixed the kids early, gen ed kids would grow up around sped kids and there would be a greater understanding of disability for the gen ed kids. It worked as kids have always been very accepting of David and this is shone in their kindness and gentleness towards him even 11 years later.

Any classroom is only as good as the staff!!!! Something else that parents must commit to memory. Sped classrooms are made up of a teacher, para's and support staff such as PT, Occupational Therapy (OT), Speech and sometimes even a nurse depending on the physical severity of the kids in the room. If this team doesn't work together as a well oiled machine and have the best interest of the kids in mind, then this classroom is a fail right off the bat. Usually the teacher is leader and sets the stage for how efficiently the classroom is run. Uninvolved, under educated or out of their element teachers can make for a very long year for the other staff and a very unhappy year for the students....not to mention us parents.

Sped kids are not easy and even in a small class room of possibly 8 or less kids, there can be a multitude of different diagnosis's, personalities and physical issues which all fall under the head of special education and quite often they fall under one teacher. There can be higher functioning kids, lower functioning kids, seizure kids and kids with oxygen and feeding tubes all in the same class room. This is why para's are so important. They are the constant companion of these kids and it is their responsibility to know when that kid is just acting out or if there is something really wrong, but in order for this to happen, the teacher has to make sure that the staff is properly trained. The only way this can happen is if the teacher makes it his/her business to know the kids inside and out and has a thorough background on each child. How does this happen? By listening to the parent!!!!

Granted, I know for every great sped teacher, there are always those parents who live in denial of their child's diagnosis, refuse to cooperate or simply are too overwhelmed to deal with it all. However, for every sped parent who is involved and fighting for their child's best interest, there is at least a handful of teachers, para's and specialty therapist who never should ever  be in a room with a sped child, let alone work with them. Because of this, sped parents have to be ever vigilant and always ready to fight for their child's best interest.

In David's 11 years in school, I have had several fights over staff and trust me, the schools do not like to back down. It takes work, research and a willingness to see the situation to the end, but usually....the best interest of the child wins out because I can wear someone down if need be. David will always come first and his best interest will always be served and quite honestly, from the beginning I was told that I would always be David's voice and his biggest advocate. I was told that it was not only my right but also my duty to stand up for David and to fight for him when his needs were not being met, he was not being treated right or his health was at risk. I took this very seriously and because of this, I am not the best liked parent in the district, but they know my concerns are never frivolous and if they are hearing from me, then there is a "real" problem that will be fixed. Even in my small town, I am not interested in being liked by the school district and staff, I am interested in my sons needs being served and I will do whatever that takes.

If you are a beginner sped parent, prepare yourself. You have to be involved with your child's education. Make it your business to know everyone in your child's classroom and on their team. Make sure your concerns are listened to and if your child has a feeding tube, seizures or other issues, you personally need to educate the staff on how to care for your child. They may have your child in their classroom, but absolutely no one knows your child better than you do. By setting this standard from the beginning, you help to promote the best school environment for your child that is possible. You also give the staff a subtle reminder that you are a constant presence in your child's life and that little gets by you so if something isn't right......you will both know it and act upon it. Also, show up at your child's yearly IEP meetings and find your voice. You may have been a live and let live kind of non-confrontational sort of person before you had this child, but those days are gone. You need to give your child and his/her diagnosis and condition a voice. Without it, they may not be getting what they deserve in school nor even what they need. As their parent....you owe them the very best and sometimes that requires going to the mat for them.

I suggest that from the beginning, you get an advocate for your child and your family. An advocate can be a tremendous source of information for programs and assistance to help with your child's development and if you do have to battle your way through situations, an advocate should always be on hand. Davids advocate is through Rainbows United, but every town and state should have a Developmental Disability Organization in which sped kids can sign up and go through, throughout their lives. Early acceptance into these programs can assure space for them in programs later in life as there are years worth of waiting lists to get into some groups, programs and even funding.

Special needs kids don't come with a owners manual. Each kid is different as are their personalities and their diagnosis's. They require more attention, more care and parents that aren't afraid to fight for them in any situation necessary. While the life of a sped kid is not easy, the life of a sped parent can also be a bit challenging. However, at the end of the day.....I wouldn't trade a minute of David's life or what he has brought to mine, for an easier, less confrontational road. David is amazing and after all......he is the Incredible Mr. David! And there just ain't no topping that!!!