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!