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.

So It is Summer

Davids Last Week of School Beach Party 2014

So it is summer and I thought I would do a little David catch up. I am also doing some cross blogging this summer. If you read my other blogs, then you possibly caught my post on Summer Blogging. I am going back to my roots of writing, stretching myself a bit and doing a themed summer. David happens to be my Tuesday theme!

Summer so far is off to a pretty good start. We are in the process of getting our new pool put up as the old pool was destroyed this spring due to a storm. Thank goodness for the generosity of some amazing people, the pool has been purchased, arrived and my back yard is in full pool construction. Between work schedules and weather, it hasn't all gone as fast as my impatient little heart would like, but it is definitely going. Soon David will be doing physical therapy several hours per day and we will all be sunburned and water logged from all of our pool time.

David's ESY (extended school year) has begun and the room which held his hospital bed for well over five months is now once again his therapy room. After moving him back upstairs to his bedroom, he fought going back into the therapy room. Apparently he hated all those months in there as much as I did. Once he realized though that there was no hospital bed in there, that it was set up for school and therapy and that he could still go upstairs, he was good with it all.

He has once again mastered the stairs to go up and down. He has his independence back to navigate both the stairs and the house again. He still gets pretty tired and shaky as he gets to the top two steps, but he doesn't give up. I have no doubt that soon he will be scaling them like a pro.

We will be making one of our famous one day round trip adventures to St. Louis at the end of the month. David's Shriners doctor would like to see him there instead of through telemed here in Wichita. Since David broke his leg following his December surgery, there has been a decided change in his left hip. His right leg was the one that broke. I feel like possibly he is throwing that hip to compensate for the discomfort in the broken leg. I am thinking they may fit him in a waste to ankle orthotic to pull the hip down a bit. I am a little  worried after all he has been through, but I refuse to borrow trouble at this point.

He still does his "up downs" with his walker and he is taking more and more steps. His legs remain straight and his feet do not cross. It is literally a beautiful site. He also uses his stander and managed to stay in it for a total of 60 minutes today. Not bad for a kid who started out at five minutes at a time. He is also back to his regular PT (physical therapy) stretching but we will not get him full on PT until after our St. Louis visit.

David is very happy and loving his summer. He is now in full on teenage mode and is not a fan of waking up in the morning. He was kind of spoiled during the time between school being out and ESY starting. Now that he has to get up in the mornings again, he is really not a fan. What can I say? I'm not either.

So there you have it. Life is crazy busy, but no major speed bumps. All is basically well and we are ready for some pool time. If you have a moment and you pray, prayers would be very welcome for our trip to St. Louis. A fixable outcome is what we want. Well that......and David walking by summers end. :) 

Milestones and Summer

Well, today is Davids last official day of school. This year has been so surreal....especially the last five months. We have fought uphill battles and quite honestly, there were a couple of times I wasn't sure David would make it to this day. I questioned on numerous occasions if all the pain he went through, all the close calls, seizures, surgeries and hospital stays were worth it. Then on April 4th, when I saw him stand for the first time, legs beautifully straight.....I knew it was.

                                                                        May 2014

This school year has been filled with a lot of expectation, disappointment, fear, unrest and milestones. Even though I knew back in August as he wheeled himself down our driveway and to his school bus that there was likely both a surgery and change in his future, I had no idea how intense the year would be. I was adding it up the other day and since August 2013, there were: 4 round trip visits to St. Louis, 2 major surgeries, 32 seizures, 10 ER trips, 6 hospital stays for two or more days and 143 days without sleeping in our own rooms or our own beds. Last night ended that.

It was a milestone that seems rather mundane and hardly blog worthy to most,  but for our family.....it was huge. While David still hasn't mastered more than seven stairs under his own power, he has been miserable not being able to go upstairs. David is not a huge tantrum thrower however, his inability to make it upstairs has been the catalyst for more than one meltdown of late. The kid literally loves his room. Yesterday, as I got out of bed after my 143rd night of sleeping only because I was dead tired and not because I was comfortable....I decided it was time for the move. I knew David was not comfortable either and soon ESY (extended school year) would be starting and we would be needing that room as a classroom. It was simply time!

As Z carried David up the stairs last night, the look on that little guys face was priceless. He knew what this meant and he was beyond excited. His oooo's, ahhhhh's and laughter spoke volumes. Once ready for bed, he snuggled down in the familiarity of his blankets, pillows and bed and was asleep within five minutes. THAT my friends was a record. This morning he woke up happier than I had seen him in ages. As for the rest of us.....I think Z said it best when he said, "This feels normal. This is what I have been waiting for." Trust me, any person or situation in our house deemed "normal" by any of us is extremely high praise. It is a good feeling.

Now we move forward to summer. There will be ESY, swimming, physical therapy, doctors visits, get together's and likely a few surprises along the way. Hopefully ER visits and hospital stays won't be included in any of it.....but maybe, just maybe......walking will.

Yep, it has been quite a year. We have been to the depths of hell and as usual, David fought back and hit milestones along the way. What an amazing kid he is and how blessed we are as a family to have him, be able to watch him turn into such a wonderful young man and how excited we are to see him hit each and every milestone. These are especially amazing knowing that no one ever thought he would even make it out of the NICU 13 years ago.

                                                                           August 2013

We are blessed. We are grateful and most of all......we are READY FOR SUMMER! 

Happy Summer everyone!

Special Needs

Special Needs! It is a common term these days. The official definition according to Google is: particular educational requirements resulting from learning difficulties, physical disability, or emotional and behavioral difficulties. From all that I read, special needs is basically used as a noun describing children with different abilities. When I was a child, "special needs" was not even a term. Kids were called, slow, not right or retarded. They were not terms meant to be mean, they were just very literally, what people saw and put words to. The only special child I ever knew growing up was Sammy. Later on I knew kids that couldn't read well who were defined as slow, but knowing them as adults they later learned they were dyslexic and have become quite successful, but Sammy was the only one I knew who was even comparable to my David.

Over the years, many things have been said about David and myself. I have been called strong and even amazing (whats so amazing about a mom taking care of her kid?) and David has been called everything from a miracle to a burden. Harsh? Yes, but if you have a kid like David, you learn to roll with the punches and ignore both rudeness and ignorance. As the saying goes...."Haters gonna hate!" However, whether you view David as God's greatest miracle or both a physical and financial burden, if a special child is not part of your everyday world you simply don't have the facts either way. I have some amazing friends who love my entire family and would do absolutely anything for David.....except be in a room alone with him for more than five minutes. They love him and if he is with me, they talk to him and play with him, but the second they might have to be alone with him, they go into full on panic mode. This is not a negative reflection on them, it is simply a fact. If I am there, then anything happens and they are simply a background support for me. However, if they are alone with him and anything happens (seizure, the need for a diaper change or a need for communication) and they fall apart. This is why it is very difficult for me to find people to watch him. Thank God that there are a couple of people out there who know David well enough to have my back in an emergency, but for the most part.....there are very few that feel absolutely comfortable with David and who know and understand his needs. So to most of the world, I am sure that to some extent if people are dead honest, they do view David as more of a burden than a miracle simply because they fear him and his needs.

For those that wonder "how" I do it daily, I simply reply....."How could I not?" David is my child and I signed on to be his mother, just like all parents do. I didn't say I would be his parent as long as he was perfect 24/7. I signed on to be his mom through anything....the good, the bad and sometimes even the heartbreaking. I do it daily just like any mom takes care of their kid daily. The only difference is that I have to take care of David differently at times. It doesn't make me strong or amazing. It simply makes me a mom!

When David was born, having a special kid was not even on my radar. It is only natural for parents to hope and pray for a happy and healthy child. When the unthinkable happens though and the child comes early and he is so small and so helpless and you know that you might very well lose him, then all you do is hold on for dear life and pray that his life is spared. You pray for his healing and most of all you pray that regardless of what his health issues might be, that you have a chance to be his mother. I literally spent days sitting in a chair by Davids bed, rosary in hand and praying hours on end. I would doze off in my chair during a prayer, wake up and start again where I left off. It was the very definition of flooding heaven with prayers and I imagined angels and saints surrounding my little two pound son, joining me in prayer and giving his little body the strength to fight. I remember time and again thinking that I didn't care what health issues my son had, I knew we could get through them. I just wanted to be able to hold him, snuggle him, kiss him and take him home. At the time though, I couldn't do any of those things. All I could do was pray.

Once we got David home, Tim and I knew that together, whatever life threw at us from this point on, we could take it. David was beautiful, healthy (despite his chronic issues) and happy. God had answered our prayers and we were ready to take on the world. When Tim died suddenly a few months later, my world turned inside out. I had never signed on to do everything all by myself, but I did sign on to be a parent for better or worse. Losing my spouse did not mean I could just cut my losses and walk away......nor did I want to. My kids were all that I had left.

Being a single parent is never easy in the best of situations. There is so much that is shared co-parenting and when one is gone, you become both mother and father and everything falls upon you and only you. With a special needs child, it is slightly more difficult. With each knew diagnosis or change in condition such as seizures, you are alone and have to educate yourself, prepare yourself and make his world the best place it can be despite his issues. It is no different than if you have a child with cancer or any other sickness or disease, except in Davids case, he is chronic and therefore his disabilities will likely last a lifetime. However, we as parents take the mountains along with the mole hills in stride and muddle through.

Someone ask me the other day, since I had non-special needs kids and David, what the differences were. I found it an intriguing question as no one has ever asked me that before. The things that most on the outside looking in would view as difficult where David is concerned really aren't that bad. David is 13 and he is incontinent. This is not particularly one of the more fun aspects of life with David, but it is not horrible either. As a parent you can get used to diaper changes, but at 13 when he shows interest in actually using the toilet, the excitement for all involved is beyond words. Sometimes when we have average need kids and more than one, the milestones such as potty training are exciting but after the second or third child, they become more of a hurry up and move on rather than a celebration. With David though, not only is he hitting a milestone, but I know beyond a doubt that he also understands that milestone and when you are told early on he might never understand these kind of things, well.....it is just amazing! Also, as a mother with other kids, you learn early on not to dwell on the differences between special needs and average needs. Your kids are just your kids, each individuals in their own right and none viewed as greater than the others. In my house, only society has ever judged David differently, Z and I never have.

I honestly think that no families are more blessed than those with a special child. These kids come into this world fighting and their spirit is contagious. Families learn the importance of love, compassion, kindness and selflessness. In return they gain unconditional love, complete acceptance and a new understanding of what is actually important in this world and what isn't. In our house, selfishness and ego are checked at the door because once through that door.....David has our heart and there is nothing we wouldn't do for him.

Is having a special child easy? Absolutely not! When you have to deal with doctors, insurance, hospitals, ER's, schools, staff and judgmental people that come in the form of both family and friends....at times it is stressful. Then do all of this by yourself with no money....... and it is exhausting. The upside though, is that I wouldn't trade a second of these last 13 years, because life with the Incredible Mr. David has made me a better mother, a better person and it has made my family strong. It has given me a voice I never had and it has made me realize that God makes no mistakes. David is a gift and I thank God each and every day that He chose us. As I said....it isn't easy, but then again......the best things in life never are.