Back to School and Such

So, I have had several people who have contacted me in the last week, saying they had friends or family with a special needs child and they had questions. Could they contact me? The answer is always......YES! I don't have all the answers and there are likely going to be questions I simply can't answer, BUT, I will always try to help in anyway I can and I will do my best if I can't answer a question, to point you in the direction of someone who maybe can. Having a special child can be daunting as many of the answers you need you have to hunt out yourself. I have spent a lot of time over the years asking questions, making calls, writing emails and making contacts. If I can help someone NOT have to deal with all the red tape, misinformation and endless hold times waiting to talk to someone who will simply transfer you to someone else where the hold time starts all over again.....then I will do it! You can contact me here in the comments section, on Facebook or at my email.....zelam07@gmail.com. Aside from the world keeping up with David, this blog is for the purpose of helping others find their way through the world of special needs and if we can help just one person....then this blog has done its job.

That being said......we had our first week of school in the books and David is now on the second one. He seems to love school this year and he has his para Niki which definitely helps to make his life a lot more stress free. Add to that a new teacher with a new outlook and possibly a better understanding of sped kids and we are already leaps and bounds ahead of last year. David is a teenager though and he is acting the part more and more.

The first two days of school, David was perfection both at home and at school. By Wednesday though, he was realizing that this was back to school being an everyday thing and I started to see a bit of early morning rebellion. By the end of the week, the school was also seeing the teenage side of my son. He worked hard though and he walked a lot Monday thru Thursday. By Friday his body was toast and he did more sitting than anything else. Saturday he spent most of his day laying around and watching TV. Yesterday morning as I put him on the bus, I saw that "Monday morning, I don't want to go to school, I am mad at you and this is going to be a rough day for all of us," look in his eye. According to the after school notes.....I had that look pegged.

David had a summer of sleeping in, playing when he wanted to, laid back Extended School Year, and swimming. He loved that no schedule schedule, and now, having to get back into the swing of the real world doesn't seem to be pleasing him. Still and all, he is much happier now and much healthier too, than he was at the end of the last school year. I have every faith that after Labor Day, he will be back in the swing of things which will be easier on us all.

As the weeks move forward, his schedule is going to get even busier. Starting Friday he will be going to out of school physical therapy. I have found a PT that works in a little town to the west of us and her specialty is kids with cerebral palsy. We are looking at seeing her twice a week. Then as the weather gets cooler and the pool is no longer an option, I am also looking into putting him back into horseback riding therapy. The first time he had the horse therapy he started doing some amazing things and he dearly loved riding. I would like to see this happen again.

The weather is still to remain hot for the next few weeks and the pool is our salvation. Along with that, I hear tell that David maybe called out by someone to do the ALS ice bucket challenge. That should make for an interesting video....and yes I will share it with you all. For now though, we are getting all of our back to school appointments and our PT scheduled and out of the way. We are hoping for a healthy and happy school year and I know David is looking forward to his first three day weekend of the school year this coming weekend.

Today all is well in Davidtopia and for that we are both grateful and content! So, until next week.....I hope you all have a good one!

No Limits

In case I don't say it enough, or someone is new to this blog and simply doesn't know......David is amazing! If you know him at all or know his story, then you know that where David started life almost 14 years ago, to where he is now, is nothing short of a miracle. A child who was beyond critical for the first 3 months of his life and his life expectancy was only 15% and if he lived, his chance at being anything more than a body in a permanent vegetative state was about 95%. Since that third month though, (coincidentally...his actual due date), he has never stopped proving doctors wrong and pushing through any preconceived limits. Yes, he is a true miracle.

I don't know about all special kids, but David seems to save up his amazingness and then all of a sudden do a lot of new things at once. Sometimes these spurts of achievement have come after seizures and other times they come out of the blue. For David, all of these watershed moments are hard fought battles with his mind and body having to work many times harder than yours or mine to achieve these goals. What for other kids are expected milestones, for David are extreme benchmarks that I have learned to rejoice over and have also learned not to take for granted in my child or anyone else's.

In 2011 we made our first trip to Shriner's. David was walking with his walker, he had been since he was five, but as he was getting bigger, his knees were turning in more and more and he was becoming awkward and tripping himself up. We learned at Shriner's that it wasn't just his knees causing the problem, but it was also his legs and his hips. He needed surgery! A surgery he should have had when he was about four, but no local doctor had told us about. Without this surgery, his hips would soon deteriorate and eventually David would no longer be able to walk with or without a walker and his life would be one of constant pain. The surgery, six hours long, included the breaking of bones, screws, metal plates and a recovery time of at least six months. The surgery went off without a hitch, but the hours following were harrowing and we almost lost him. The recovery was every bit as difficult as I was told it would be and the kicker was, the first time around, we really had no idea what to expect.

It took a good six to eight months before David was anywhere near back to where he was pre-surgery. The spastisity of his muscles was mostly gone. His legs from the knees down were amazingly straight, but his hips which had been surgically turned out, just continued to turn. Any attempt at walking was impossible because now he was bowlegged to the point that his feet would cross. The surgery was only partially successful, which I learned sometimes happens with kids like David. So on the last day of 2013, we were back in St. Louis and David underwent another surgery (this time about four hours long) to pull his hips back to center. He was put in a spika cast which is a cast on both legs from waist to ankles. Again, the surgery went off without a hitch, but the next three months were a series of complications due to the surgery, most dealing with his seizures. Again the doctors expected at least a six month recuperation and possibly another three to six months before he was back to pre-surgery movement. The recuperation expectation time was then thrown back further as he broke his right leg just above the knee, the day after his spika cast was removed. He was in another cast for another six weeks. This threw his physical therapy back another two months. We were losing ground quickly and I was becoming increasingly frustrated. Two life threatening surgeries and he might not walk! This was simply unthinkable. Then once again, David proved that his desire to achieve was far greater than any broken leg or delayed PT.

In April (four months out of surgery), David stood for the first time. It took my breath away as no one thought he could...at least not at that stage of the game. By the end of April, he had once again mastered crawling up and down the 13 stairs in my house. He was back to his old independent self. By May he was taking steps with his walker and gaining both strength and muscle in his legs. In July, he went back to Shriner's for a checkup. When asked if he could walk with his walker, David proceeded to stand and take off at a sprinting speed in their spacious hallways. When he finally stopped, he had taken about 20 steps. All in attendance were duly impressed.

Mid July, our long awaited pool was finished and ready for use. Pool therapy is the best therapy for kids like David. He has always loved the pool and the minute he got in for the first time this year, he was in his element. Wearing only little blow up arm floaties, he kicked his way around the 18 x 33 foot pool for over three hours. His legs propelled him back and forth and in circles over every inch of that water and when I finally pulled him out (and not without much duress might I add) he was exhausted. After several days of this he began to start kicking his legs outside the pool....  something he had never done before. Always before he would move his legs by lifting them with his hands, but now, he was kicking with only the power of his legs. Whether he was sitting or laying down, he could kick those legs. It was after being in the pool that he did his little sprint at Shriner's too.

So here we are today....eight months out. David has been pulling himself up on the coffee table and seating himself on the couch, he is using his legs and his own strength to transition himself from his wheelchair to the floor and we are working on transitioning from the wheelchair to his seat in the van. He is getting very proficient at climbing over the side of the tub for his baths and we are back to toilet training where he also has learned to transition himself.

Yes, David is amazing! His shear determination and desire for independence and mobility are awe inspiring and each new milestone is a key that is unlocking a happy and independent future for the one who almost 14 years ago, didn't seem to have a future. I have no doubt that God has big things in store for my son and I would say at this point....even the sky holds no limits for David.

Para's..The Backbone of Special Education

Since I have been updating David's blog on a regular basis, I have run into several parents and grandparents whose children/grandchildren are special needs. Most have been newly diagnosed and the adults in the children's lives are asking questions. The moment the child in your life is diagnosed, then your world begins to expand with new terms, new people and a new path that you never dreamed you would be on. It can be overwhelming and much can slip through the cracks simply because you don't have all the information.

Today I am going to talk paraprofessionals. Before David started school, it wasn't a word I was familiar with. Of course, I had never dealt with special needs before and when I was in school, classrooms didn't have para's. There were special education classes that I assume had para's but I had no contact with them and therefore they were off my radar. For parents with special needs kids just starting school, your child's para/para's are a very integral part of their education process and quite frankly in my book, para's get neither the recognition and praise they deserve nor the pay.

A para's duties are to assist the teacher and spend their time one on one with a special needs child. Whether the child's disabilities are physical, emotional, developmental or all the above, the para is the primary care giver of your child and the one who spends the greatest amount of time with your child during the school day. Ideally, your child will have at least two para's in the classroom who know your child's needs and know how to take care of them, whether that be what they eat and how they eat, medical issues, toileting or behaviors. Having at least two para's working with your child and being familiar with them as well as the child being familiar with the para's makes for an easier time if one para is gone or if one para isn't quite getting through to your child on a certain day, the other para is backup. However, this isn't always the way it works. At any rate, there should be at least two para's trained on every child in case of emergencies. Yeah....in a perfect world!

The special education teacher is over all the sped students. The para's usually work with 1-3 kids depending on the class size and the severity of the disabilities. Some kids require much more one on one time than others. In David's case, his para/para's first and foremost have to know his health issues as his seizures are something that have to be not only watched, but also recognized. David also has circulation issues. His para has to take off his braces several times per day to make sure his feet are pink and if they aren't, then steps need to be taken to make them pink. While David does well eating most foods on his own, he needs to be watched with foods such as carrots and watermelon. His para has to  know this and be on top of it. She has to know the proper way to put David in his stander and how to adjust him for his hip. She has to take direction from Occupational Therapy (OT), Physical Therapy (PT) and Speech and since they are only in the classroom for a short time weekly, take their instruction and work it into his daily schedule. More than all of this though, the para's have to know these kids and know what motivates them and what shuts them down. They have to be able to think outside the box when working with them and together with the teacher and the therapists work as a team so that the kids can get the most out of their learning experience. In other words, the teachers and the therapists make a plan, but the para's are left to carry it out.

A good para can make a world of difference in a sped kids life. They are the driving influence for that child the better part of 7 hours, 5 days a week. They can motivate, teach and help a sped kid achieve in ways parents never dreamed possible. On the other hand, a bad para can do just as much in a negative way causing a sped child to shut down, become frustrated and even act out or become aggressive. It is definitely not a job for everyone.

David has been very blessed in having some excellent and caring para's along the way. They have been instrumental in paving the way for an amazing school experience for him. I have always felt that his paras truly cared about him and had his best interest at heart. When he went to the primary school, it was their tremendous care and watchful eye that alerted me to David's shunt malfunctioning. At the time his shunt was clogging and unclogging. When it wasn't working properly, the para's picked up on it immediately. I will forever be thankful to them for doing the wonderful job they did with him. When he moved from the primary school to the grade school....saying goodbye to those para's was heart wrenching.

Moving to the grade school, after a couple of failed attempts with paras, David finally got an amazing one. In the grade school, for whatever reasons, only one para was assigned per student. David and his para quickly bonded and she learned David's issues, behaviors and strengths in no time. Daily, she sends home notes on David that cover everything including what he did scholastically that day, any milestones he hit or any issues he had. She has also been the one to catch Davids seizures many times and stopped them before they could get out of hand. She has learned to read him well enough to know if he is getting sick, in a mood or just plain tired. She knows how to motivate David to constantly keep him learning and moving forward and how to get him on track if he falls off or gets distracted. Because of all of this, David wants to push himself and that is why I believe he stood for her for the first time after his last surgery.

Last year the school tried to pull David's para from him at the end of the year without warning and without transition. It was here that I started learning my rights as a parent, David's rights as a student and the sped departments rights as the final word. While it is all still a little bit fuzzy to me, I learned that if it is not in your sped child's best interest, you MUST fight. Not transitioning a sped child shows a failure in the special education department to understand the students it is suppose to be educating. Also, while the district has final word over who is hired and fired, if a para is a good fit for your child, it is up to you as a parent to advocate for that para. However, if the para is not a good fit, it is not only your right but your duty to make a para change. Not all para's and sped kids click. It is not personal, but is should be addressed so that issues don't occur because of the incompatibility.

Sped kids are not mainstream kids. They have issues and disabilities that make being able to fully function in a mainstream classroom impossible. Because of this, para's are invaluable. If you get a good one, hold on for dear life. Advocate to have that para written into your child's IEP and don't take NO for an answer. Get an outside advocate such as Rainbows to help you with this. When dealing with a sped kid, you will quickly learn that you often have to fight to get what is best for your child, but at the end of the day that is your child and really it is your duty to make sure that they don't get short changed by a teacher, para or the educational system.

Quite frankly folks, para's are the backbone of special education.Without them, the sped classroom would be a very different and much less inspired place. So to all of you para's out there who strive to make both the classroom and the world a better place for kids like my David, I say.....thank you. And to Niki, Anita, Laura, Traci, Tricia, Terry, Diane, Rita and all the rest who put kids first and take on diapers, medical equipment and attitudes all before 9 a.m. I say.....THANK YOU from the bottom of my heart.