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.