Seizures Suck! An Update

David was born with two major issues which the doctors felt from birth on would dominate his life. The first was cerebral palsy (CP). CP affects his muscles and his mental development. The other was hydrocephalus. Being hydrocephalic means that the fluid does not drain from his brain properly and thus builds up. If left unchecked it causes swelling on the brain and eventual death. Once this was discovered in David, a VP shunt was put in behind his ear to drain the fluid from his brain into his stomach where it is absorbed. The risk here is that his shunt can malfunction, clog or become infected. This has to be monitored and if any of these things happen, then he has to have immediate treatment in the form of antibiotics and a shunt replacement.

So you would think that these two conditions would rule our lives. They don't. They never have. In fact until David was 8 years old, we lived nicely watching David grow, thrive and learn. He was on no medication except for the occasional ear infection and we lived life just as most others do. What changed everything and turned our world upside down happened on January 21, 2008. That was the day I woke up to find David on the floor of his room. He was pale, lifeless and completely unresponsive. As I sat there waiting for the ambulance to arrive and holding him, praying that it would not be the last time, I wondered what the heck what was going on.

Once the EMS arrived, they told me he was post seizure. I had no idea what that even meant. As they worked on my baby and I stood by helplessly, I wondered how this had happened? Once in the PICU, the doctor told me that David had suffered a seizure and when I found him, he was on the other side of it or "post" seizure. How long the seizure was I have no idea, but he was running a fever so they surmised that his fever had probably jumped quickly sparking a febrile seizure. He spent 36 hours never opening an eye (likely do to the adivan he was given post seizure).

At the time we didn't know if this was a one time deal or if this was something new we were adding to our lives. The doctor put him on a seizure med and said that we would watch him. Once I got him home, I did what I do best. I panicked! This was new territory for me and it had made a sneak attack on my son and my peace of mind. We were good for about eight months and then another one hit. Again....another febrile seizure and I got to see it from start to finish. This gave us another PICU stay and caused me to face the fact that we might be dealing with more of these.

All was good after this until I started noticing, usually at night right after he fell asleep, that he would startle awake; eyes huge, grinding his teeth and making "oooo" noises. These episodes were short lived, maybe 30-45 seconds, but they were becoming more frequent. His pediatrician thought they might be acid reflux episodes and so he was put on reflux meds. They didn't stop, so I went to his neurologist with it. He wasn't sure what it was but thought an EEG might tell us something. Sure enough....the kid was having seizure activity all over his brain and these were mini silent (sort of) seizures. It was now definite....seizures were going to be a new part of our lives.

Since that day and the diagnosis of a seizure disorder, seizures have been the main ruling force in our home and in our lives. Here is what I know six years later about seizures and David's seizures in particular. In 2/3 of all seizure disorders, there is no known reason for them. They know that febrile seizures are brought on by a quick raise in temperature but the temperature does not particularly have to be high. A raise from 98.6 to 101 in a short period of time can bring on a febrile seizure. Febrile seizures can spark other seizures, but don't always.

Some people can have one seizure in their life and some can have many. Seizures can have something to do with hormones and at a certain age (late teens) simply stop. Seizures can be controlled with medication BUT when a child is constantly growing, certain meds either become ineffective or the child continually outgrows the dosage, and because of this, constant bloodwork is necessary. Sometimes seizures can be controlled on one med, but in many cases, it takes several different kinds to work with each other to control the seizures.

In David's case, his CP could be a part of his seizures, but because he started them later in his childhood, it may have nothing to do with it. One day David's seizure may simply stop or......he could have them his entire life. His seizures are not typically life threatening, but unchecked they could cause him to injure himself or choke. His seizures also tend to cause him to get more aggressive and agitated when he starts having a lot of them. Some of the side effects of his meds can cause the same issues, so he is on other meds to counteract these side effects. David currently takes 6 different meds and he takes meds 3 times per day. His meds cost over $2000/month.

A couple of years ago, David was implanted with a Vagus Nerve Stimulator or VNS. The VNS is in his chest with wires running to his vagus nerve where seizure activity I guess....tends to happen. He carries a high powered magnet with him wherever he goes. The VNS is a battery powered device that is on for 3 minutes at a time and off for 1 minute. This can be set for different settings but due to his current activity this is his new setting. In case a seizure slips through at that 1 minute interval, that is when the magnet is used. If you swipe it over the device when the seizure starts, it usually lessons the seizure time by about 80%. It was our hope that with the VNS we could cut back his meds, but so far that has not been a possibility.

Dealing with seizures I think, has been harder on David than his CP or hydrocephalus put together. The exception to this maybe his surgeries to walk. At times when his seizures are bad, I can see it frustrate him and wear him down. They have had him in the ER and hospital dozens of times and they have kept the family on vigilant guard waiting for the next seizure episode. To put it mildly.....seizures suck!

All this being said, if seizures are the worst of what we have to deal with on a day to day basis, then life is good. David is due for another EEG next Tuesday and then we should know more about his latest outbreak.

The thing about seizures is that they are brain related and truthfully, any good neurologist will tell you, what they actually know about the brain wouldn't fill a thimble compared to what there is to know. Slowly the puzzle of the brain is being put together, but for people like David, it isn't soon enough.

One new possibility that even our neurologist is starting to talk about is marijuana treatment. On studying it, it really does seem to be causing some remarkable results. In the treatment it is usually an edible and it has no hallucinogenic properties. What they are seeing with this is that people whose seizures can't be controlled any other way, are being controlled by this treatment. It is still in the experimental stages but the possibilities for this being a break through drug for seizures are looking really good. No....I will never be a proponent of pot for casual use(seen too much to go there) but there is no denying the health benefits of this substance.

So here we stand. David is doing well. His outside therapy has helped him immensely and everyday he uses his legs more and more. He is walking distances with his walker and kicking everything in site. He is a teenager with attitude and he loves to laugh and socialize. I would say he is right on track with every other 14 year old in this respect.

Yeah, seizures suck, but in the big scheme of things, David is doing great and we as a family are blessed! 

A Truly Amazing Life

Life in Davidtopia is very busy right now. He has physical therapy (PT) two times per week and water PT once a week. We are up before daylight to get him to the west side for his PT's and as always, there are hiccups with insurance, but he likes his therapy and so far, he seems to be gaining from it.

For those of you who may be just tuning in, David has cerebral palsy (CP). His particular type of CP was brought on by a premature birth which resulted in a grade 4 brain bleed and a host of other issues. His CP is both physical and mental, with the physical part affecting his lower extremities (hips, legs, ankles) much more than his upper body. Early on he was little and light and he walked really well with a walker, despite the tightness in his muscles. As he grew though, he began to have issues holding his own weight up and being able to have stability on his feet. When he was 12 years old, we learned about Shriners Hospital in St. Louis and David was sponsored by a local Shriner to go and get checked out. There we learned that Davids hips were really bad and that not "if" but "when" his hips gave out, he would be in constant pain for the rest of his life. The only thing to be done was a long and painful surgery to repair the hips and also to fix the muscles in his legs and knees. Everlasting pain vs. surgery? It was a no-brainer. He had the surgery. Unfortunately, the surgery over corrected the problem and within a year, he had a new problem. He couldn't even stand because his hips had spread out to the point that his feet crisscrossed. Strengthening PT was impossible because he simply couldn't stand. Now, nine almost ten months ago, David had the hip surgery again. This time they pulled the hips back to center. In April, he stood with straight legs for the very first time ever. In September, he was okayed for intense PT, as his hips had healed and his bones had strengthened to the point where he wouldn't hurt himself. And now you are up to speed!

David has the desire and the drive to walk, now he just needs the strength and as far as PT goes, we still have mountains to climb. What is the saying...."You have to crawl before you walk and walk before you run." Well David is literally at the crawling stage. Now he is working on the walking. He is working on strengthening his legs, hips and his entire core. Even though his upper body is a thousand times better than his lower body, as he grows, there is more of him to support and the surgeries have weakened his upper body a bit. He is working to regain that strength and move forward. At PT, he works on supporting himself and doing fun things like playing ball, kicking the ball and reaching for things. He also constantly works on sitting/standing which for you and I would be similar to squats. The sit/stands help to build muscle and prepare him for walking.

The pool therapy is an amazing strengthening tool as he is constantly kicking in the water to keep himself moving. On his own in our pool he started getting stronger just being out there playing. It is because of the pool that he started kicking outside the pool. Before that, he couldn't lift his own legs to kick. With the targeted pool therapy, I am hoping that the change will be amazing.

When not at PT, David does daily routines at school of sitting on an exercise ball to learn trunk control and strengthen his core as well as he does stretches to keep his muscles in shape so he doesn't lose anything. He can actually take off and walk with his walker, but because the strength isn't there yet, he tires easily and his muscles will begin to shake. Sometimes it is hard to watch, but then I put it into the perspective that David is like an athlete training for a marathon. There is a lot of hard work, pain and effort that goes into that training, but when the finish line is crossed, it is worth every second of that painful journey. I feel that when David crosses the finish line, we aren't going to remember the surgeries, the long and hard recoveries, the sleepless nights, the pain or the endless PT. All he or I will be thinking about is that he did it!!!! He is walking!!!! It will all have been worth it for both of us.

And speaking of growing.....David turned 14 years old on Sunday. He is about 4'8" tall and he weighs about 80 lbs and he is all teenage boy. He got several gifts, mostly cars as he is in love with cars, but his favorite gifts were the Mylar balloons he got. Three guesses why. They have Spongebob on them of course. So far they are holding up under his constant handling but I fear they are not long for this world.

Life continues on here in our humble abode. We keep doing our best to move forward and kicking the obstacles out of the way and so far, David appears to be on track...... for a truly amazing life. 

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!!!

There is No Crying When Dealing with Special Needs

                                                                 (Not happy after brace)

The other day, I had a very sweet lady come up to me and say how much she enjoyed and learned from my blog about David. She went so far as to say that while she liked and read my other blogs, she truly looked forward to my David ones. That made me feel good that David has that kind of a following and that people care so much about him.

While life with a special needs kid is full of happy and rewarding moments, there are also those times that as a parent, I want to sit down and cry. Most of those times revolve around David being in pain, being sick or being frustrated. When I can't help him to avoid these situations, it truly breaks my heart. Last Friday was full of two out of three of those parent crushing events.

It is early September and it just so happens that a good many of Davids regular appointments fall right now. Friday we were lucky enough to cram several into one day. That right there is difficult for both of us, especially now that Z is working and going to school. I no longer have him along as my muscle to help me lift and transfer David and his wheelchair in and out of the van. No, we don't have a wheelchair van, so every appointment stop requires me to pull his wheel chair out of the back of the van, assemble the wheels, lift David from the car seat into the wheelchair and then when we come out.....we do it all over....in reverse. Now you have four or five appointments in a day and this momma's back is not happy and David is exhausted.

Friday our day started with blood work. David has to have his medicine levels checked periodically for his seizure meds. If they get too high or too low, then they have to be adjusted or he will start having seizures again. David used to be really good about getting blood work done because it was only an occasional thing, but after this past winter and spring where he was constantly in the ER or hospital, you come near him with a needle and he is going to react. Quite frankly, we have this down to a science. I hold his opposite arm and someone else holds the arm to be stuck and then the phlebotomist sticks him. This method works pretty well unless.....they miss the vein on the first try or it blows on them. That morning I gave him plenty to drink to avoid vein issues, but the fact is, after all the picking and prodding of this year, his veins are skiddish to say the least. His arms are nothing but needle mark scars and finding a good vein is not always easy. He held still the first stick, but when the vein blew, they went for his hand. I cringed because nothing hurts worse than a hand blood draw. As they stuck his hand, he turned pale and then began to show his disapproval of the whole ordeal. Knowing how he must be feeling, I could feel tears burn against the back of my eyes, but there is no crying when dealing with special needs, so I sucked it up and tried my best to distract him. The vein once again blew. Finally, a good one popped up in his arm and they went after it like a dog after meat. Unfortunately, David was pretty much over all of it and as a line of people was forming behind him for their own blood work, I held his arm tightly while managing to also hold his head so that he would not hit it backwards, while the other two held the other arm and drew the blood. Once he saw the blood flowing freely into the tubes (4 in all) he settled down. This wasn't his first rodeo and he knew this meant that the vein torture was soon to be over.

The minute the band aid was placed, David was back to his happy self, waving at those in line behind him and saying "bye" to his favorite nurse. He doesn't hold grudges as he forgets the pain the second it is over, but he knows when they are going to poke and prod him and he is not above putting up a fight in hopes of avoiding another stick. It makes me sad and it hurts me to see him hurt. I would do just about anything to keep him from having to go through that, but truthfully.....it is just part of the life he has, thankfully though.....it is a very small part.

While the rest of his appointments were much less invasive and there was no more sticking, David was not the most trusting child the rest of the day. I had to explain to him each time before a doctor walked in that no one was going to stick him. After our pep talks....he was fine. The other appointment though that did not exactly leave him with a smile, was the one where we went to get his new back brace. This brace is not what I expected and it kind of left me wishing that I had had them do it at Shriners, but I just couldn't afford two more trips back and forth in a 60 day period, so we got the script and had them make it here in Wichita. The brace looks like a plastic corset with velcro straps. Once he was put in it, it made it so that he has no choice but to keep his trunk straight, however.....he can still bend to the side, something we are trying to avoid.

It was obvious he hated his new brace and it was hard for him to hold himself up in it. After about two hours and another appointment, I could tell he was very uncomfortable. I felt horrible for him, while I was driving the half hour home. The brace maker told us that he should start out wearing it 2 hours of a morning and 2 hours of an afternoon and then each week gradually move up a half an hour. After seeing how uncomfortable he was in it Friday, I let him have the weekend off . Yesterday I put it on him and sent him to school. He sits so straight and after having the weekend free, he was holding his own pretty well in it. After the two hours though, not so much. By afternoon he was in fight mode when they tried to put it back on him, so he ended up going without it. I decided to call his new PT and ask her what she thought and she said....it's his core. He has no strength in it, therefore putting this brace on him at this time is not really helping. She suggested we start strong core exercises with him (balancing on an exercise ball) until he can sit on one and balance on his own for 15 minutes. At that point, then we put the brace back on and start at 30 minutes twice a day. It sounded good to me and if it helps to keep his discomfort down, then I am all for it, so wish us luck!!!

As a parent with a special needs child, the good times are amazing, but like any parent, seeing your child in pain, sick or frustrated is awful. We want to step in and fix things, but that is not always possible and yes....it is hard to watch the struggle. There has been many a time I wanted to cry seeing him have to go through these things, but tears solve nothing. He and I both have to be strong.....and we are. After all, like I said....there is no crying when dealing with special needs!

An Update and An Opinion

Yes, once again I am painfully aware that it is Wednesday and I am just as painfully aware that I have no projects or even real accomplishments to show for this week......unless of course you consider going through 3/4 of a tank of gas running around to different appointments an accomplishment. If that's the case then I should get a gold star for my efforts!!!! However, since I missed blogging about David yesterday because I was running and all, I figured you all might like to hear about him instead of how many gallons of gas I used in the last two days! Your welcome!

Yesterday was David's first official physical therapy appointment. To say I am over the moon with this new therapist would be an understatement. This girl is very good as David let her work with him the entire time without getting upset at all. There are two definite reasons for this. The first one is she is a little tiny girl who is just gorgeous. Definitely Davids type. And the second and probably most important reason he behaved was because she knows how to distract kids from the task at hand. She played on Davids love of balloons and gave him one of those really thick balloons with the rubber band attached. He played with that the entire time as she stretched him and manipulated his muscles. She and the entire staff were also huge on praise and as he walked with his walker through the gym. The other therapist and office staff came out to high five him and tell him how great he was doing. It was the push he needed to continue. Yes, David does now, and always has, worked well for praise.......and candy!

After the PT thoroughly checked out his strengths and weaknesses (and there are still a great many weaknesses), she came up with a plan. This plan she assured me would ensure that his weakness would be improved upon greatly. Under this plan, David will be seeing her twice a week and then seeing the swim therapist once a week. With all of that and horseback riding therapy (HIPPO therapy) too, we should be seeing some great changes in David fairly soon. I am excited....not just for the change, but also for how he relates to this therapist. I feel like we are finally headed in the right direction!

As if that wasn't amazing enough, before his therapy yesterday, David had his yearly IEP. While I can't tell you what those letters stand for, I can tell you that it is a meeting with myself and all involved with him at school. It is to check on past goals and set up new goals for David scholastically. It covers his basic educational needs, while including all of his therapies. If you remember, last year I spent the year very unhappy with school, but this year, it is a night and day difference. There are many new faces in the mix and some fresh ideas balanced by some impressive experienced ones. I am so pleased with all I have heard and seen at school this year and although David is still adjusting to getting back in the swing of things.....he is also thriving. I am a happy momma so far!!!

So we are all moving forward. Now if I can just keep that nasty virus that is going around away from him. THAT has ER/hospital visit written all over it. I did tell the teacher yesterday that if kids start getting sick with this, I will be keeping David home for a few days to avoid contact. I know I can't protect him from everything, but from this wheezing nightmare.....I will do my best.

Finally, I would like to say a word about the young special needs child who was trying to be a part and participate in the ALS Ice Bucket Challenge. Some other kids, as a prank doused the child with urine and feces instead of ice. My question is....why? Why would someone think that was funny to do to anyone, let alone an autistic child? This young man was 15 years old and he thought he was doing something good and being a part of something special. Instead, he was deliberately humiliated, I'm sure embarrassed and bottom line....bullied.

It is my understanding that the kids responsible have been identified, as celebrities such as Drew Carey and Jenny McCarthy (who has an autistic child) put their resources to work to help find the offenders. So should these kids be punished? Should charges be filed against them? Here's my thoughts...... The offenders should be first and foremost made to publicly apologize to the young man. THEN, these kids should have community service in which they have to spend a period of time working with special education kids and learning about them. Then they need to be put into a position where they have to educate others on special kids and finally.....maybe the punishment should fit the crime. Maybe they need to have an "ice" bucket challenge of their own and have it filmed so that they too can have a taste of how this young man felt. Sometimes the simplest punishments are the best. These kids need to know that what they did was wrong and I do sincerely hope that whatever punishment comes their way....it is one they learn from and take that lesson through the rest of their lives.

Well there you have it....an update and my opinion! Boy you lucked out today!

The Best is Yet to Be

It was a loooooong weekend that we all needed. Now back to reality. There are some really exciting things beginning to happen in Davidtopia and this momma is over the moon!!!!

Cerebral Palsy is a strange ailment as not all CP is created equal. Some CP kids are beyond severe with the illness affecting both their mental and physical capacity to the point that there is little body/physical movement and no understandable mental acknowledgment. Often there is no audible vocalization and the vocalization that is there is just sounds. Sometimes loud and sometimes soft, but only sounds. It is my belief that there is more going on inside their heads than we know and this is their way of communicating. Unfortunately....their communication is lost on us.....unless you know the child very well.

On the other end of the spectrum, there are those kids whose only affliction with the disease is physical and with good therapy, by the time they become adults, there is little sign they ever had CP. In between these two spectrums there are varying degrees of the illness and the majority of CP kids fall in here.

David is considered low to mid functioning with CP because both his brain and his body are affected by the illness. Davids mental range if tested ranges anywhere from a 3 year old to about a 7 year old. This range will hopefully continue to extend and the gap will gradually close over time as he continues to grow and learn. We call him very smart, because he never stops learning. Will he ever be able to sit down and solve for x? Likely he won't, but he will continue to learn so that he can get as much independence in this life as possible. We put no ceilings on David because he continually breaks through them.

Something that has a direct affect on Davids mental capacity is his physical capacity. It has been proven time and again that when the physical improves, so does the mental. It just goes to show how intricately our bodies are designed and how our mind and body work together.

It has always been my hope that David would walk and it has been an obvious desire of his. He knows what to do, he just has to make his feet and legs cooperate. This is the first time in over two years that Davids feet and legs are once again on the same page with his desire. He is 8 months out from his last surgery and all the bones have been strengthened and his recovery is at a place where intense physical therapy is necessary. We have talked about intense PT for two years and only now is he ready for it and at a place where it will actually benefit him.

I heard about a place in a little town down the road that had a PT who specialized in kids with CP. I rerouted my original taking him to the hospital for PT plans and started checking into this new place. I heard amazing things about it and her and decided to see if this was a better fit for David. I am pleased to say....it was. After telling the PT about David's previous PT experiences and the trauma resulting from one PT in particular and her seeing David not quite at his best that day (he hates PT), then she came up with a plan.

PT is amazing, but will only work if the patient is happy and invested. David is not quite ready to be that invested in stretches and people touching him. This didn't deter her in the slightest. After seeing video of how far David has come just kicking around in our pool, she decided that we need to start with pool therapy. According to her, this will continued to strengthen his legs and build muscle and most importantly......it is a therapy that he enjoys. Also, once those legs are strengthened, then the stretches and the less fun PT will be much easier for him to do and much less stressful for all involved. I was sooooo in love with this idea. As it stands I will be taking him to a Y in Wichita unless they can find a way to contract with a recreation center a little closer to home. At any rate though, the drive will be worth it if this does what it is suppose to and from what I have already seen.....it will.

The next exciting piece of news was that this new PT wants David back in Hippotherapy. HT is a form of physical, occupational and speech therapy in which therapists use the characteristic movements of a horse to provide carefully graded motor and sensory input. David took HT several years ago and the change in him both mentally and physically was amazing. Unfortunately the place he was going, decided to get rid of all of their therapists and just have volunteers working with the kids. This didn't work and David could no longer go. Apparently, they have a place again and his new therapist is pushing for him to go. I know David will love it and I am so excited to be moving forward so that Davids independence continues to grow.

So onward.....into new territory. Life is changing and soon David will be getting closer to his goals. This new school year is starting out in such a positive way and with surgery in our rear view mirror, I am so hoping for only amazing things in his future. Stay tuned.....the best is yet to be. 

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. 

Understanding!

Yes...I am aware that it is Wednesday and Project Day...however, I have no more projects readily done and I forgot to blog about David yesterday in the middle of my choatic day, so I thought I would just make it up today.

Last school year David and I had our hands full with a special education teacher whose special education credentials I highly question. My reasons were varied and many but they all boil down to my first hand experience with her lack of understanding where special needs kids are concerned. That is what today's blog is about....understanding!

I have talked in the past (last week to be precise) about people not giving kids like David a chance. They have preconceived notions about David's abilities and therefore they don't even try with him because they don't feel like he can move forward. They have the notion that he will always be stuck in both mental and physical disability hell. It just isn't so, but only those who truly understand sped kids understand their abilities as well as their disabilities. However, the quirks and stubbornness that goes with sped kids also need to be addressed and accepted.

While David is an amazingly smart and funny kid, he is also stubborn beyond belief and he is extremely OCD about a number of things and he gets frustrated because he is non-verbal and can't always get his point across. What we (those who love him) accept as being a part of David, some in the outside world are not quite so accepting of. Let's start with his OCD.

In the last few years, David's OCD has become more pronounced. It is small things and some of them I think have to do with him feeling secure in an insecure world. For instance, if David goes to the ER....the rails have to be up on both sides of his bed in the room. I don't care how sick he is, he will throw a fit until this happens and if they have to lower them to take blood or start an IV, well the rails being down seems almost worse to him than the needle stick. He is just as picky about his wheel chair. If his feet aren't on the foot rest properly or his arm rests aren't down right, there is potential for a bit of a fit until it is fixed. Luckily, he is getting to an age and an ability where he can fix much of this himself. Some other OCD traits he has are.....he can't stand for someone to cross their legs when they are sitting. If he see's it, he will physically uncross your legs. His worst trait to me though, is his string fetish(for lack of a better word). He has had this since he was very small and because of it, I am constantly picking up string and fibers in my house. His fine mortal skills are amazing and  if he is bored or I turn my back for two seconds, he will pull string or fiber out of anything. This includes but is not limited to...socks, blankets, towels and washcloths. His neurologist says that it is OCD behavior. I think he is just trying to drive me crazy. 

While his OCD is a pain from time to time, it is really not over the top. It is just part of David and how his brain works. However, to some at his school....his behavior over his OCD has proven to be a challenge and they feel they need to break these OCD habits and therefore end the upset behavior that comes with the pulling of strings or the positioning of bed rails. OCD doesn't work this way. I am thinking this should have been Special Education 101 which makes me wonder how some got into the sped field in the first place. Pick your battles people! Don't give him washcloths to fold if you know there will be a battle over strings. Let him handle his foot and arm rests on his wheelchair and be done with it. Don't try to control him, get him upset and then call me and tell me that he is combative. Accept him for who he is and don't try to change him if his actions aren't hurting him or anyone else. You need to work around his abilities/disabilities....NOT the other way around!  He is after all....special needs. From what I have learned, sped kids like David have little they can control in their world and for David it is doubly hard because he doesn't have a voice (literally) so he can't be heard. OCD behaviors in these kids are their way of having some control in an uncontrollable life. Instead of abolishing the behavior (with zero success might I add) work with him. Help give him a voice and some control and the behaviors just might go away on their own.

Another issue that David has had that is common with a lot of sped kids is stubbornness. While David does live in and within a world of rules, like any kid he is not always the first one in line to follow them. David takes life at his own pace and this apparently doesn't always coincide with the schedule of others. An issue that David had at school, was the time frame he was expected to do something in. This might have been taking something to the office, going to the bathroom or even doing a task. His teacher told me that his para was basically falling down on her job as she was not being efficient with her time with David and they were't staying on task. She had told me this several times throughout the year and I wasn't sure what she was talking about until I happened to be at the school on two occasions and was witness to two instances of "the para falling down on her job." Again....NOT!

The first incident of inefficient use of time was David going to the office. Now David is in command of his own wheelchair. He can go fast, slow, in circles or not at all. This particular day....he chose not at all. He had gone to the office and was not prepared to go back to class because there were people in the hall. He put on his brakes and refused to move. Try as the para might, he wasn't going anywhere until he was done being social. This meant that the para had to take the time to get on Davids level and talk to him and yes....basically coerce him. Luckily David's para has been with him long enough to know how to work him and in just a couple of minutes, she had him headed back to class under his own power. Unfortunately Davids refusal to move for those minutes caused the para to get a tongue lashing which ended the moment the teacher realized that I was standing there. After I explained to her what the situation was, all she said was..."Oh!" and walked away. This was not however, the last time this occurred.

The second occasion I was there, David had been put on the toilet. Like a lot of kids, toilet time doesn't always mean they are going to do their business and get in and out in a timely manner. This particular day, David was interested in just about anything other than being on the toilet. It took a few minutes longer than anticipated but eventually....he got the job done. As the para was getting him put back together, the teacher came from another room obviously irritated that David had not already moved onto his next activity. Once again, before she saw me she lit into the para on how she was not staying on schedule. However after she realized I was there, her attitude changed. She and I had several conversations about David being special needs and therefore not always being on "her" schedule. She paid lip service to the fact that she understood this, but the reality was....her schedule would be adhered to....regardless.

Special needs kids are just like anyone else. They need love, compassion and understanding of their own uniqueness. On the other hand, sped kids are different in how they see the world and interact in it. They may accomplish the same tasks that you and I do, but they may get to their end game in a very different way and in a very different time frame. If you live with, work with or teach a special needs individual....then you should know this and be understanding of it. If you don't, then your place is not in their world. It is as simple as that.

The next time you see a special needs person, don't look at them as special in a negative way. On the contrary...give them the respect they deserve because everything they do takes at least 5 times as much effort and time as it does for you and I and yet.....they do it. That in my book makes them special in a very positive and amazing way. David struggles at times with being understood, being "forced" to follow rules he neither completely understands nor cares for and most of all.....fighting his own desire to control his universe, but he always comes out smiling, laughing and ready to try again. His ability to love and show compassion and his desire to keep going and never give up.....makes him at times.....the least special needs person I know. So yeah....understanding. It's a beautiful thing. 

The Mind of Special Needs

Much is going on in David's world right now. We are in a fast slide into a new school year and I am trying to get all our ducks in a row. Having a child with special needs makes herding those ducks a little tougher.

Of late, I have heard several comments a couple first hand and a couple second hand, about kids with special needs and it has concerned me. Two of the comments were from sped (special education) teachers. It seems that many feel that kids who are special needs (especially the delayed ones) have no real capacity to learn. Trust me, I am not shocked at this sentiment but it does concern me, especially when it comes from those who work in the field of special education. So I thought I might shine a little first hand information on the subject of special needs and their ability to learn and understand.

When you are blessed with a special needs child.....and I say blessed because you have no idea how they will turn your world inside out and very literally make it a better place and you a better person.....then you throw all preconceived notions about "normal" out the window. Normal becomes a word with more meanings than you ever knew possible.

Many make judgments on a persons mental capacity or ability to learn by how they look or act. David for instance looks healthy but because he is non-verbal (for the most part) and communicates by making noise rather than speaking, people assume he is much worse off than he actually is. I have had teachers, friends and even family underestimate his ability and even write him off as retarded because their view of him is less than normal. Perhaps I would have too in another time and place. As his parent though, I have learned that what lies in his non-verbal mind is far more than any of us could possibly imagine.

While I can't speak for all delayed kids, I can speak from experience about David. David's mind never stops and though he may be behind in what he learns....he is always learning. He understands far more than anyone gives him credit for and he is very determined when he wants someone to understand him. He understands humor, emotion and pain and uses all the above to manipulate both people and situations when trying to be understood. He is so smart in fact that years ago he learned to fake a seizure and has used that several times at school when he didn't want to do a task. Of course I can tell a real one from a fake one and I had to clue the school in and teach them the difference too. THAT is not the mind of a child incapable of learning.

As I said, people underestimate David and his ability to understand. He understands EVERYTHING that is said both to him and about him. There have been times when individuals have spoken negatively about David and ended up getting pinched or flat out hit and wondered why. They learn quickly that non-verbal and non-understanding are two different things.

At school, David is suppose to be taught functional tasks. Functional meaning tasks that have a beginning, middle and end and the end should be functional such as the steps in brushing your teeth, buttoning your shirt or putting a key in a lock and opening it. David does very well with functional learning and it takes very few tries for him to master these things. However, there have been times when he has been given busy work with no functionality or meaning to his life and he will call BS on it every time. He will try any task once but if he realizes there is no purpose in it, he loses interest immediately and will refuse the task. He will put his head on his hand and close his eyes....signalling that he is done and he doesn't forget either. Try to come back and do that task later and he will take the same attitude and stance again. You would think people would learn.

I have learned that a weak body doesn't mean a weak mind and a mind that works slower in some areas can out think a "normal" mind in other areas. With David, his mind and body often work together. As he gets more agile with his body, his mind also takes on more and becomes more active. His seizures have also at times been a blessing in disguise. As much difficulty as his seizures have put him through over the years, they have also sparked learning. We have seen him do new and different things immediately post seizure. The seizure sets off a light bulb of sorts in is brain that causes new skills. It really is something good coming out of something bad!

Special needs has many faces and many components from the physical to the mental and sometimes a combination of the two. To judge a person without knowing them, special needs or not is always a travesty and speaks more of your character than their disability. In the case of David, well....it can get you pinched or flat out ignored depending on the circumstance. I have learned that regardless of the person or their needs....special or otherwise, treating them as we ourselves would like to be treated.....with dignity and respect...... usually gets you the best results in just about any situation.

David Has Definitely Got This!

Well it has been quite a summer here so far. Someone posted on facebook the other day that there was only about five or six weeks left before school starts and I couldn't help but wonder where the summer had gone. Then I remembered! This summer has been ALL about the Incredible Mr. David!

Sunday was Davids first time swimming in his new pool and getting into it from his new deck. This project has been a labor of love by many people from both behind the scenes and hands on. For the entire summer in the evenings and on weekends when weather and work schedules permitted, my backyard has been transformed from a broken down pool, falling down deck and uneven back yard with drainage problems, to new pool, new deck and a level playing field to promote a fun place to hang out with good drainage.

With the pool being completed, there is just finishing touches left on the deck, the moving of the electrical power to the pool and one more go around with the tractor to ensure my yard is as even as possible. After that my devoted workers who have volunteered their summer to this project will get to hang up their tool belts and actually get to spend quality time with their own families again. Still, there is much left to be done to truly make this "David's" as well as the families space. I hope to complete our simple yet amazing fire pit and patio by the weekend as well as Saturday afternoon family and friends will be coming over to make individual paver stones dedicated to and for David, that will go from the patio to the deck steps. I am also putting together a movie screen made from pvc pipe and a sheet so that David can watch his favorite movies in the evenings while we hang outdoors as a family with a movie projector that was given to us by someone who no longer used it.  As you can well imagine....David has many family and friends who can't wait to come hang out with him.

David's first day in the big pool was amazing. The pool has already proved to be great therapy as he kicked

his legs and paddled all over the pool for nearly three hours. His para Niki and I worked and manipulated his legs and made his kicking a game in the pool. He worked beautifully and we were both impressed with his accomplishments thus far in his post surgery recovery.

Outside the pool we have been working on David's regular PT workouts such as up down's where he sits in a chair and holds onto his walker using the strength of his legs to stand and sit over and over. He also spends about an hour per day in his stander which promotes the strengthening and straightening of his legs. He continues to also walk in our limited first floor space with his walker as part of the therapy. He seems to be progressing nicely although his left hip has proven to be a growing concern for me as I have watched him continue to hike his hip both when he sits and stands. It has caused a change in his posture and given me reason for many a sleepless night.

It was because of the hip issue that Dr. Schoenecker, David's Shriners doctor didn't want just a telemed visit this time, but a full on St. Louis trip. He wanted to see David in person and gauge his progress and the severity of his hip issue in person. I have lived in a bit of fear of this trip, not sure what we would find out and hoping that surgery was not going to be necessary again. We missed our first scheduled appointment due to a summer stomach bug, so it was rescheduled for yesterday. As much as I am not a fan of the 6.5 to 7 hour one way trip, I knew we needed answers to make sure we were headed in the right direction with David's post surgery healing and I truly needed some peace of mind, so yesterday morning at 4 a.m. we headed out for an 11:30 a.m. appointment at Shriners Hospital in St. Louis. May I just say at this point that I am so in love with the Google Maps app on my phone and I now consider Siri a close personal friend as she guided me every step of the way and we got there with half an hour to spare?! Thank you Siri!!!!

The appointment went like clockwork as we first headed in for x-rays and then we were seen by the nurse, resident, PT and then Dr. S. When the resident came in, he wanted to see David walk. David immediately stood up, turned his walker around and with minimal help took off down a long corridor of the clinic. He caught me off guard as he doesn't really have that kind of space at home and he is never really in show off mode when it is just me and his para Niki. He was in rare form yesterday though and both his agility at the task at hand and his speed were amazing. The resident seemed rather shocked as I don't think he was expecting that kind of progress either.....especially with the added down time and recovery of his broken leg. Through his walking, the resident got to see the hip issue first hand and once we took off Davids braces and socks he also go to see his circulation issue (his feet turn purplish/black when he sits or his legs are down for too long).

When the PT walked in, she had a pretty red headed PT student with her. David's love of pretty women kicked in and he proceeded to do something that I had not seen him do since he was still in his baby crib. As a baby with a huge personality, David used to pull himself up to a standing position in his crib and when music played, he would dance by doing sort of a marching move. He knew he was funny and he loved it when we would say...."Dance David! Dance!" Well yesterday, David revised his dance moves with his walker. I know that it was strictly for the purpose of once again....showing off, but this time it was for the reaction of the pretty red head....and he got it. He stood and danced for a good two minutes as I stood with my mouth open and my eyes wide. Again.....he surprised me while entertaining all who were present for his dance. Leave it to David to multitask.

So after all of this and another set of x-rays (this time on his spine), the news was all-in-all....very positive. They think that David's hip pulling is possibly caused because he favors his right leg (the one he broke post surgery). They don't necessarily think it is a pain issue but more a comfort issue. He has screws going up that entire thigh and it may just feel weird to him. However, his pulling of the hip is causing his posture to get bad and a little more curving of his spine. To fix this, or at least attempt to fix this....David is being fit with a posture stabilizing vest. In other words, a modern day version of the old metal scoliosis back braces. Spine surgery is likely in his future to prevent future curvature, but I will cross that bridge when this current recovery is behind us and my nerves are a little less fragile.  Along with the brace, Dr. S has cleared David for intense out patient physical therapy which he would like David to do at the Wesley PT clinic. He wants him in the pool as much as possible and him getting his leg muscles strengthened every chance we get. By doing all of this, it will also help with his circulation issues and we should see his feet more pink than purple. With all of this, Dr. S seemed very pleased with his progress and he wrote his vest Rx so that we can get it done in Wichita thus preventing another trip to St. Louis in five to six weeks. He also put us back on the telemed schedule so that we can see him through Dr. K in Wichita. The best part though, was after all of that.....we were walking out Shriners front door at 2:30 p.m. ready to head back home. The trip home had every possibility of being a bit treacherous as storms were predicted, the sky was black, St. Louis was under a severe thunderstorm warning and radar showed storms all the way west on I-70. However...all we hit weres some sprinkles. Thanks to the cooperation of the weather and my new BFF Siri, we were home by 10 p.m.

It was a long day but my mind is feeling much more peaceful. David is moving in the right direction and with the added extensive therapy and his pool time, I have every hope that the next five to six weeks are going to produce amazing results. So today I make appointments and I prepared for much work on all our parts. It is nothing we can't handle and I know after what I saw yesterday.....David's has definitely...got this! 

Staring at Special Needs

Today's blog was prompted by a Facebook post I read the other night. It was from a fb friend whose grand daughter has just in the last year or so, developed a condition that has caused her to lose her eyesight. The little girl is fairly young and is now having to use a white cane to get around. This I know has been hard on her and the whole family as they are having to transition into the world of special needs. The grandmothers post brought up something that I don't know that I have ever spoken about on here before....the public's reaction to those with special needs. 

Quite frankly....after five months in the NICU with David and not knowing if he would live past those first five months, I rarely worried what anyone else thought of my little guy. However, as he grew older and there was a need for orthotics, a wheelchair and a walker, people were obviously starting to take notice. Add to that...that he was absolutely adorable and very loud due to finding the world outside our house very exciting to him......and yes, there was no way people weren't going to stare. I learned early on though that some stared because he was cute and a little ball of energy and they simply just couldn't help themselves. Some stared because he was very vocal which caused them to smile at him and sometimes even giggle while others it obviously irritated. Not everyone wants to shop at Walmart with a special needs child waving and saying "hi!" all through the entire store. As he got older though and his disabilities became more pronounced with his walker, wheelchair and actions....then people did stop and stare at times. Because I had years to get used to both my childs disabilities and the reactions of others, it rarely phased me. Honestly, most of the time the reason it didn't bother me was two fold. One was that I was usually too busy paying attention to David, what I was doing and whoever else that was with me, that I didn't have time to worry about who was watching or staring at us. Second, it is human nature to stare at that which we view as different. I have done it. Strange hair, strange outfit and yes even someone with special needs, an injury or a defect....I too have stared. It is not out of rudeness....but sometimes you have to take a second or even third look for your brain to process what you see. There have also been times when people stared because David was just down right loud. I would try and quiet him and sometimes like any kid he would quiet down, but if he was excited....then he was letting me know it and where other kids could talk a mile a minute and tell you they are excited....David could only make noise and get louder as his excitement grew. What are you to do? He is an excited kid!

I learned early on that David was going to be a stare magnet. I also learned that most people, including children aren't being mean when they do it. Kids especially are honest creatures whether they are speaking or staring. A kid will tell you that your hair looks funny, your butt is big or the dinner you made is yukky. They are also just as honest when they stare at a kid that looks different than them. If we tell them "not" to stare then we are perpetuating the idea that there really is something different there and that in itself causes kids to feel like there is something wrong and uncomfortable about people who are special needs. I learned this when I started David in the Early Childhood Education program in our school district when he was just three years old. The general education kids were put in the same classroom with the special education kids and they were taught to work together, play together and understand each others differences. This was amazing because the kids learned to love David because they understood that deep down.....he was a kid just as much as they were. That has carried on through the years.

After I understood that kids were honestly more curious about Davids orthotics, his wheelchair or why he didn't talk..... much more than they were trying to be rude or insensitive, I decided to be proactive and use stares as teaching moments. Many has been the time when I see a child or even at times an adult staring at David that I will walk right up to them with David and say, "Hi! This is David. I saw you watching us and I thought you might like to meet him." Then I will go on to explain that David has Cerebral Palsy and that is why he needs his equipment and why he can't talk well. This usually opens up a dialog, especially if I am dealing with a child. They will ask "Why can't he talk?" or "Why can't he walk?" One kid even said, "His wheelchair is cool. Can I ride in it?" That is when you realize that these kids are just curious and in learning mode. To make them feel that they shouldn't stare or ask questions is the same as saying your child has something to be ashamed of because they have a disability and therefor you should politely avert your gaze, ask no questions and most of all.....make everyone in the room uncomfortable. It instantly molds a childs mind and perceptions towards disabilities and the disabled.

For those of us who have dealt with disability from the beginning of life....you get a lot of experience with the art of dealing with it. First and foremost you get rid of your own prejudice and discomfort over disability and believe it or not....we all have them. Yes, even you at first have your moments of embarrassment that your child has a disability and is not like the other kids. That is when you find the stares and the questions intrusive, rude and even sinister. Often though you will find that this is your own prejudice and yes....embarrassment....being projected onto them. Once though you realize that this is just a part of the person you adore and that he or she is much more than their disability, then you quickly replace that embarrassment with pure pride that this is your child and he/she is amazing. That is when these uncomfortable moments easily become teaching moments so that others learn that our differences and disabilities (and again...we all have them) are only a small part of who we really are.

I truly feel for those who are thrown into disability suddenly. Everything they have known up to that point changes and because they and their family are not given an instruction manual on how to feel, act or even move forward with their new found way of life, I am sure it is tremendously difficult. The funny thing about disability though, is that it has brought out amazing strength, growth, empathy and achievement in many where disability was thrust upon them. A prime example is Amy Purdy who lost both of her legs from the knees down. Her life was so full of potential and promise until an illness caused her to lose her legs. Rather than let that define or defeat her though, she made it push her forward and she has become an amazing athlete and just recently a finalist on Dancing With the Stars. And I will tell you a little secret....I stared! I recorded every episode and stared as she danced on those prosthetic legs. In fact I would rewind and stare some more each time she danced. I was fascinated by how beautifully she danced on those interesting "feet". Each time, tears would come to my eyes as I could only imagine how difficult her journey had been and how in all her beauty and glory, she was single handedly putting a new face on disability and yes....special needs. She was using her disability and the worlds ability to stare as a teaching moment.....and she schooled us all!

So yes.....there will be stares, maybe even whispers and moments of awkwardness when you have a special needs child. But then again....you can have those same reactions if you walk out of the bathroom with a piece of toilet paper on your shoe or your dress stuck in your panty hose. I speak from experience. The key is to take those moments with your child and make them count. By introducing David at these times, I am teaching others about disabilities and teaching David that by being proactive about his disability he can break down walls, avoid misconceptions and in the end....those people may still be staring, but with very different eyes.