Things I have learned from raising a son with OMA

Things I have learned from raising my son with Ocular Motor Apraxia:

1. I need to believe more in God and my son, than in his brain scan and what we have been told about it.
   
   
2. His struggles and challenges affect me (emotionally) more than they affect him. He is actually quite oblivious about them.
   
   
3. He shouldn't be protected in a bubble. If I want him to have a life similar to his brother's, then he should be allowed to experience and live like his brother.
   
   
4. When he is faced with a challenge, I must remember the many things he has overcome in the past. He has succeeded before and this time won't be any different.
   
   
5. I pay too much attention to the bad times, when in reality there is only one melt-down for every 20 giggles.
   
   
6. There are many people willing to help you. They may be family, they may be friends, they may be neither yet become both.
   
   
7. There are many people in need of help. I can be that help, and so is my son.
   
   
8. If he is ever looked down on, we will remember to look up (to God). He won't know low self-esteem as long as his heart knows he is His child, made to His image.
   
   
9. It's nice if a child knows the letters and numbers, but it's best if he knows that he is loved and cared for. He also must know that doing good things is better than doing things well.
   
   
10. Our tiny obstacles pale in comparison to what other people get to experience. If they are able to stay positive and hopeful, we must do so as well.
    
    
11. Some of the things he can't do, and some behaviors he may show, aren't triggered by his health condition, but rather because he is just a toddler, or a boy, or a human being.
    
    
12. Praying really helps. It gives me peace, it gives me hope, and it has brought me miracles.
    
    
13. There is a life purpose in each individual. My son's health condition doesn't stop him from having a life purpose, in fact, his may be extra special and I can't wait for him to grow and discover it.
    
    
14. Seeing how hard he worked to accomplish the things that for most come naturally, has made me appreciate the wonder in simple things that otherwise would have gone unnoticed.
    
    
15. I love him, not more, not less, not any different from his brother. Love sees beyond our eyes, and this is why he will always be capable of being loved by others.
    
    
16. His body (including his brain) may be affected by his health condition, but his mind and soul aren't. These are the ones that truly matter anyway.
    
    
17. Things do get better through the months and years. We are better because of all we have lived and learned. We are better because of everything I just said, and the things I can't even find the words for.

Ocular Motor (Oculomotor) Apraxia Website

"...We still imagine, daydream, and visualize our desires and many of those imaginings become real..."

That's a quote from my mother-in-law, who wrote it couple days ago on the last Ezine of the Napoleon Hill Foundation. It's rather fitting that she is writing about belief, applied faith and visualization, just as I'm ready to see the product of my very own applied faith and vision. A project that I hinted about couple months ago. A project that is so dear to me mostly because of whom I'm doing it for.

When we began our journey of having a child with OMA, we realized that whenever we had a question, we would hit a wall. There was barely any information about OMA on the internet, let alone any books or other resources about it. Doctors? Not much help either. In their defense, OMA is a fairly new discovered rare condition, and not much research or clinical studies have been performed to document the few adults living with OMA today.

We live in United States and my son is a patient at one of the best hospitals in the country. If I couldn't find or access information about OMA, I knew other parents had to be in the same situation, with the same questions I had, with the same worries I had. This is why I began blogging couple years ago, sharing everything I knew about OMA, from the little I could gather from doctors, to the many experiences we were living by raising our son Patrick.

I have talked before about a closed Facebook group with more than 400 members from all over the world, who are either parents of children with OMA, or adults living with OMA. This is such a great resource that it's unfortunate that there are many people out there that don't have a Facebook account and so they will never be able to join it. There are others that have Facebook accounts, but our searches never led us to this closed group, which is what happened to me for couple years, and which is probably what happens to the people that never come across this blog.

What is more unfortunate of it all, is that there are not medical professionals, on this blog, or the Facebook group, or anywhere else, reading our questions, hearing our concerns or giving us advice. There are no experts anywhere that can see that we are families wondering what to expect and what we should be doing to best help our children or ourselves with OMA. There are no institutions, policy makers or researches, that can see that there are hundreds of families in great need of more studies being done in regards to OMA, and that we are willing and ready to help them out, because we know that by doing so we are helping ourselves. Nobody can see us, or hear us, or read us aside from ourselves.

This is why I have been working tirelessly the past couple of months to create a public website. These months can perfectly be described by this quote my mother sent to me recently:

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened" Matthew 7:7-8

I have been asking a lot for the past two months.

I have been reaching out to doctors, researchers and Institutes asking them for help to share with me any findings on OMA so that I could put it up on the website. I have been asking for individuals with OMA or parenting a child with OMA, who were willing to join my adventure and make this website real. I have been asking my husband to cook every day this past two weeks and watch our children more than the usual so I could focus on the website. I have been asking friends and family to buy jewelry from a dear friend, who kindly offered to donate a percentage of those sales to help me pay for website expenses and any other related projects. I have been asking God for his blessing and guidance every step of the way.

I asked and I received.

We needed to have a place, where to put all the important information about OMA, so that people would get the answers to the very basic questions that come to our minds when we first hear about this rare condition. We have that place today.

We needed a space, that served as an international network for all the people affected by OMA around the world to be able to connect with each other. From parent bloggers, to the great Facebook group, to adults living with OMA waiting for people to ask them questions. We have that space today.

We needed a page, where people could find gathered all the studies and reports done about OMA, that until now have been scattered all over the web. We have that page today.

We needed a source, where people could find tips that would help us know how to better raise our children with OMA. A place where adults with OMA would give us suggestions about practicing sports, going to college, getting a job, and even driving a car with such rare eye condition. We have this source today.

We needed a database, where people could find doctors who were familiar with OMA. Many people in many countries struggle finding a doctor who can give them a proper diagnosis, or answer basic question about this condition. We have that database today.

We needed a platform, where we could list all the medical community that are helping us with our cause, not only to thank them for their help but also to motivate other institutions, researchers, government, non profit and private organizations to join our cause. We have that platform today.

We needed a project, where the individuals who were eager to do something about OMA, were able to invest their time, passion and skills to actually do it. We needed to have their faces and their stories listed, so that other people that were ever interested in doing something about OMA, got inspired to take action as well. We have that project today.

We needed that and much more. And this is why OcularMotorApraxia.org exists today.

There is still a lot more work to do, not only to include all the information still missing on the website, but to tackle other projects that I'm sure will be born because of this platform we have created. It's great to see what we can accomplish, when we combine the people, and the efforts, and the time, and the skills, and the knowledge, and the mental attitude, and the faith. It's great to see what we can accomplish, when we have a major purpose driven by emotions and motives so strong and so meaningful to us. I did it because of my son, for my son, and for all the children, the parents and the adults with OMA who share the same journey my family does. I know those who have joined me have done it for the exact same reasons, too.

"...We still imagine, daydream, and visualize our desires and many of those imaginings become real..."

Indeed they do.

What do you imagine? What do you daydream? What do you visualize?

Which of these desires are you making real?

Overcoming Behavioral Issues: Talking to your children about their challenges.

A few weeks ago Patrick had a play date at the house. At some point, Patrick saw pretzels on the counter and he asked for it: Paqui wants Patses (meaning Patrick wants Pretzels -occasionally he still refers to himself in third person). One of his friends asked me what was Patrick saying, and when I told him, he said "Why did he say it like that? Why is he saying patses?" Patrick just looked at him and stopped talking, I could tell he became aware he wasn't speaking right and got shy. This caught me off guard, so I just said something like "Because everyone says things different... I think that's a fun way to say it" and I moved on, giving everyone pretzels.

Later that day, my husband got home from work and we went out to eat. On the way there, I talked to my husband about the incident, and we talked about a few other issues relating to Patrick's therapies. I honestly believed the kids were not paying attention to what we were talking. Once we got to the restaurant and my husband tried to get Patrick out of his carseat, Patrick turned his head away from his dad and avoided looking at him from then on. My husband immediately knew that Patrick had heard the conversation and he was feeling either embarrassed or upset, or both.

That weekend we went to see a theater play for children, but Patrick was very sensitive. He cried a lot and asked to leave when he saw all the people. We were able to convince him to stay and eventually he enjoyed the show, but he had to sit on my lap the whole time. On Monday he had Ocupational and Speech Therapy. We were told that the gym they usually work on was being used, so they had to go to a different one. Big mistake.

He threw a fit. He had an absolute meltdown and cried for so long. It was hard for the two therapists and myself to calm him down. We had to do a lot of negotiating with him to eventually get him to cooperate and play at the session. I had to stay with them the whole time. He began to enjoy the therapy the last 10 minutes or so, but then it was time to leave. Another big mistake. He began to scream and throw things and cry. He didn't want to leave, but he didn't want to be there either. He began to run around the hallways crying out loud. The therapist and myself were trying to reach him to calm him down but it was impossible. He found an empty gym and so he ran across that room, to the opposite corner, where he found a place to hide and once in there, he threw himself on the floor and just cried. He cried and cried and cried. I had never seen him like that. He wasn't throwing a fit, this was different. I could see my son hurting, I could see my son suffering and crying his heart out.

I let him cry for a little awhile. I knew he needed to get it out, whatever it was that was making him sad, and given that his speech is limited, and hitting people or things isn't really his thing, I figured tears would do it for him. He then was able to come with me and leave that place. I couldn't wait to leave the place. He left for school OK and he was calmed the rest of the day, but he was a little sad, too.

On Tuesday we had therapy again. The therapist made sure the usual gym was available this time, so he was able to go in by himself. At the end when the therapist came to talk to me about what they worked on during the session, Patrick got upset and started to push his brother and grabbed a trash can and threw everything out. He was running and pushing things, just trying to grab my attention I guess. He was very upset that I was talking to his therapist. We had been doing this for 4 months now, and never had a problem like this.

Couple days later we went to try out one of the MyGym classes for toddlers. Patrick was a nightmare there. At first he didn't want to participate on anything. Once he was comfortable enough, he began to push things, he wasn't listening to me much, he was playing rough, and when it was time to leave, he had another meltdown. He cried for a long time. I'm a short person, and Patrick is a 4 year old boy who is actually on the tall side, so controlling his crazy movements isn't precisely easy. It's winter time so there I'm trying to put his shoes on, jacket on, gloves, hats, and do the same with his brother but it's impossible. I'm completely on the floor trying to control my child. Parents come and go and I can tell everyone is giving us the look. It's Thursday and it's been like this all week. Complete meltdowns Every.Single.Day. At this point I'm emotionally exhausted.

What's happening to my son?

We talked to his teacher and the therapists about this new behavior. By "mistake" we attended a support group for parents of children with Sensory Processing Issues (I will talk about this on my next post) so we talk to those parents about this, too. My husband and I talk about all of this over and over trying to figure out what to do. Also, we recently began to watch the TV Show Parenthood -and coincidentally we watched the episode where the parents realize is time to talk to their child about his Asperger Syndrome and asked the psychologist for help. Everything above got us to the conclusion that it was time to talk to Patrick about his challenges.

It became obvious that he is now self aware that there are a few things that he can't do like everyone else. It's obvious that his behavior is telling us that it's bothering him, so we need to talk to him about it. But it's also obvious that he is just a 4 year old and we don't want to burden him with information he may not only not be able to process, but also that may make him too self-conscious and with low self-stem. We are told we need to talk to him, but it has to be very informal, very short, very basic, and in a very loving way. I mustn't cry when we talk so perhaps is best his dad says something. And he does.

While I'm serving dinner, I overheard his dad asking him why he thinks he goes to "fun class" (therapies), Patrick doesn't answer. My husband tells him "We all have things that we are good at, and things we need to practice more. You need to practice your speech a little, but you will be fine in no time because Ms. Morgan and Ms. Kristin will help you with that. Maybe Robbie some day will need to go to fun class, too. There are things you can do better than Robbie, and things Robbie can do better than you, and that's OK, we all are constantly learning. We are so proud of how hard you work and we love you very much."

Patrick only said OK. He acted like he didn't care much about that talk, but he did. I know it, because the meltdowns disappeared after that. We understand now that he has difficulty controlling his emotions, or knowing how to react and what to do with his feelings. I know, too, that he will have more episodes like this one as he grows and new feelings arise. But my mental attitude will be different. I won't let negative thoughts get the best of me. I'm my son's biggest support, and if I'm not 100%, how can he be 100%? I won't worry about what is about to come. For now, he knows we got his back and we love him, and he knows we believe he is perfect just the way he is. He knew all this before, too, but sometimes he will need to be reminded, and that's OK, because we are his parents, and this is what we do.

Overcoming Behavioral Issues: Sensory Processing Disorder (How is Patrick affected?)

As I mentioned on my last post, Patrick was evaluated by an Occupational Therapist, who tested not only his fine and gross motor skills, but also his Sensory Processing Skills. Patrick's evaluation displayed scores in "Some Problems" range with Touch and Body Awareness; "Typical" performance range with Social Participation; and "Definite Dysfunction" with Vision, Hearing, Balance and Planning and Ideas.

Vision and Hearing.
I will start by addressing these areas, particularly "hearing", because it was the first problem we discovered. Since Patrick was only a few months of age, we noticed he was extremely sensitive to loud and unexpected noises. We know some babies are afraid of the vacuum cleaner, for example, but Patrick used to cry totally freak out to noises like the faucet on the bathtub, a blender, doorbell, music or TV that are unexpectedly turned on, animal sounds, and even stuffed animals noises, among many other things. As Patrick grew older, his tolerance to some of these noises got better, however, his over-responsiveness to certain unexpected loud sounds continued and began to concern us.

He was also very afraid of small, fast-moving objects and animals. We thought maybe it was because of his eye disorder. Patrick's eye condition (Ocular Motor Apraxia) make him have difficulty tracking objects moving horizontally. Imagine one year old Patrick seating on the floor, then suddenly a dog comes barking and moving around. Patrick not only can't run away (or even crawl -due to low muscle tone), his eyes also have difficulty tracking the dog's movements. So what does Patrick do? He gets afraid of being attacked without being able to defend himself, so he starts having a panic attack. Perhaps baby Patrick believed stuffed animals could voluntarily move, and that's why he used to be afraid of them, too. This is how my husband and I made sense of the situation, but we didn't know how to help him avoid getting panicked.

When he was almost 3 years old, we talked to his OT about all of this and she was a life saver. We used to grab the doggy (or whatever was making him afraid) and be like "look, it's fine, it won't do anything to you, look, I'm petting it, you can pet it too! Which she told us was an absolute mistake. The thing is, Patrick is in panic mode, his mind is so far away that he won't reason to "it won't harm you". So the OT said we should not force the child to confront his fear right on the spot. Instead we needed to respect his fear, and say "bye talking bear, byeee" and put it away. Eventually he associated the "bye" with taking the scary things away, and so he began to say "bye" on his own to things he didn't want. All we had to do was to listen to his "bye" which in other words meant "take that scary thing away from me" and so we did just that.

It made a whole world of difference. He could be in control of the situation, and he knew we would respect his wishes. If we went to the Zoo, he would be so excited walking towards the animals, but at a certain point he would say "bye elephant" and we just knew we were getting too close to them, so we would stop right there. Any step closer could mean total Panic. We knew it, and he knew it. So we would just admire them from the distance and move onto other animals. As he grows he gets more familiar with them and the distances get reduced. He is just very cautious all the time, but warms up to anything eventually.

Touch and Body Awareness
It took a long time for Patrick to stop mouthing toys and other objects. He was waaay passed that stage, but he continued doing it. Eventually he replaced the objects with his thumbs, and so now he likes to put each thumb all the way back to each set of molars and chews on them while he is watching TV or trying to fall asleep. He is often sticking out his tongue or pushing his lower teeth with it. We know now that it's all about seeking that sensory input in his mouth. We use chewy tubs and seem to help.

He puts a lot of pressure when drawing, and often times doesn't realize the strength in which he pushes, opens, pulls or moves things. He grasps objects so tightly it is difficult to use the object. His hands are always making a fist, not because he is ready to hit someone, but it's just the way he moves around.

His body in general is sensory seeker. He loves standing under the shower just to feel the water in his body. He doesn't sleep unless he has a somewhat heavy blanket on him. Ball pits are his f-a-v-o-r-i-t-e thing in the world. He loves throwing things (and he has amazing aim) so we have plenty of soft balls that he can throw around the house and a jump-o-lene where he can just throw himself and get the deep pressure he wants. Robbie is a tough little guy and his dad of course loves playing rough with them so thankfully Patrick gets ways of satisfying these sensory needs. He loves to be hugged tight, too, and this is definitely my favorite part. =)

Balance and Motion
The vestibular system (located in the inner ear) is in charge of several things such as postural control, perception of body movements in space, gravity, attention, bilateral coordination, ability to cope with stress and auditory-language among other things. His balance and coordination aren't perfect. Heights, uneven surfaces, narrow paths, stairs... all these make him move with extreme caution. He bumps onto things and people often. Patrick can't ride a kiddie bike, and I can already tell it's going to take years before he is able to master that skill. He is much more sensitive and adverse to vestibular input than other kids. This sensitivity contributes to avoidance and hesitation with daily activities that involve vestibular input.

Sometimes it feels like Patrick isn't 100% aware of where his body parts are. If I tell Patrick to touch his cheek, he has no problem doing it. But if I touch my cheek, and ask him to imitate me just by watching me, he may touch the lip, or the forehead, and may take him a couple tries before he touches successfully the cheek. And if I were to cross my left hand all the way to right cheek... well, forget it, he is just going to raise one hand, then the other one, and touch his hair, then try with the other hand, then start all over...

Planning and Ideas
The difficulty in performing the tasks mentioned above are affected also by his struggles with planning and improvising. Patrick often fails to complete tasks with multiple steps and has trouble coming up with new ideas during play or other activities.  Motor planning plays a huge role in the way he approaches things and places. I know he struggles with this. He is not able to put on shoes or dress himself or to even take off his jeans without some sort of help. At first I thought it was just related to his low tone which caused fine and gross motor delays, but now I know it's mostly due to his difficulty planning.

Just to put an example, for awhile I had the Pack 'n Play filled with small plastic balls, so the kids could use it as a ball pit. One day, Robbie (15-18 months old) placed a stool next to the Pack 'n Play, he climbed on to it, and then he climbed into the Pack 'n Play. I was amazed that he had already figured out a way to get in without help, while Patrick (3 1/2 years old) hadn't all that time. On top of this, when Patrick tried to imitate Robbie, he got stuck climbing into the Pack 'n Play. I saw how difficult it was for him to decide which leg had to move first and how, and then what arm goes next... For Robbie there was no thinking, once he was on the stool, it took him a second to jump in. But with Patrick, the movements aren't spontaneous. He has to think it through, and then he struggles coming up with the plan and coordinating his own body to accomplish said plan.

Social Participation
I addressed Patrick's social skills on this post. There isn't much to add other than he recently had few episodes of being very uncomfortable in closed spaces with a lot of people. He also seems to be bothered by routine changes, sometimes with things so simple like placing my purse on the couch instead of the table where I usually put it, or his dad sitting on the right side of the sectional sofa instead of the left side, where he usually sits when we watch a movie. Not sure if these are social participation-related, but one thing I know is that two weeks ago he was having a really rough time being "out there" because of situations like these. He was having meltdowns almost every day and it was difficult on me to see him going through it. I know I was supposed to talk about it on this post, but this is already long enough that I will have to leave it for next week.

Enjoy your weekend!

Overcoming Behavioral Issues: Sensory Processing Disorder

Last year I blogged a series of posts related to Patrick's behavior. I called these series "Overcoming Behavioral Issues" and I identified 4 main reasons that were triggering Patrick's bad behavior:

1. Speech delay
2. Nutrition
3. Sensory issues
4. Medical condition

I wrote separate posts to explain with more detail his communication and nutritional issues, but I really never got the chance to talk at length about how his medical condition was affecting his behavior.

This week is the perfect time to resume the series, Why is that? Because this past Monday we had a really, really, really bad day. But before I tell you what happened on Monday, I think is important to explain what is Sensory Processing Disorder, or Sensory Integration Dysfunction.

I found the best explanation (everything in blue) on the SPD Foundation's website:

Sensory processing refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration." 
So basically, we are wired to respond to everything we feel and perceive through our senses. What we hear, what we eat, what we touch, what we see, and what we smell - everything is processed in our brain and then in turn this emits a response, like if we hear something too loud, we may cover our ears, or if something is too spicy, we may spit it out and get some water! 

Sensory Processing Disorder  exists when sensory signals don't get organized into appropriate responses. It's a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. 
Imagine a classroom with 10 children, and suddenly the fire alarm goes off. Five kids get surprised and maybe a little scared, they immediately look at the teacher waiting for her reaction to explain what's happening and what to do next. Two other kids are too busy playing to get too concerned, they do notice the noise, but they just wait to see if it goes away. Two younger kids get scared and cry, but as soon as the teacher explains that it was a false alarm and everything is OK, they calm down. And then there is one kid, he panics, he hides, he cries and screams and shakes... it's hard to calm him down, it's hard to get him to listen and it takes a lot longer and much more effort to get him to stop screaming. This last child shows an overreaction to a loud noise, this reaction is an indication that the "cause" is provoking an "effect" that isn't within the norm, hence, it shows that there is a disorder in the way he process this sensation. 

Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life. 
My husband tolerates spicy food more than I do (and I'm the Mexican one, you would think I could eat a jalapeno and no complain!) but does my sensitiveness to spicy food mean that I have a sensory issue? No, it doesn't. The key to identifying the difference in "every person perceives things different" from an actual sensory disorder, is when that "different perception" affects your life. When it's affecting significantly the way you socialize, the way you learn and the way you are, that's when you know it stops being a normal thing and it becomes a more serious issue that needs to be addressed. 

Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. 

The child in that classroom who panicked at the fire alarm, may only have an issue with loud noises, while the sensations coming from his nose, mouth, touch and eyes are perfectly OK. While this child overreacted to the situation, there are also children with SPD who may show no emotion, no reaction whatsoever to a sensation that otherwise would cause reaction in most people.

Still other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed - and inappropriately medicated - for ADHD. 
A child who is often pushing other kids, throwing things and actively searching for physical input, might be thought to have ADHD, when all he needed was to get his need for physical stimulation taken care of. These kids benefit from taking a break from the classroom activities to enjoy a few minutes of physical activity, and after receiving the input they needed, they get back to their classrooms and work perfectly fine along their peers.  

Often I feel like SPD is the new ADHD or the new Autism, in the sense that SPD sometimes is treated like a trend: More and more often kids are (mis)diagnosed with it. A child that's too shy has Autism; a child that is too active, has ADHD; and today, a child that may fall in either or has SPD. Do all the kids diagnosed with SPD really have a legitimate medical problem in the way they process their sensations, or are we not letting kids be kids anymore?  We need to be careful when applying any of these terms to our precious little ones, because there are kids who really have SPD, ADHD and Autism, and are looked down by other people who are so tired of all these disorders on the rise. On the other hand, there are many children that don't have these conditions yet are diagnosed and treated as if they did, causing real problems in the child. 

For the parents that believe their children may be affected by SPD, you can read this article that talks more about the trend vs the real issue. I encourage you to get your child evaluated by a professional Occupational Therapist who will be able to tell you if your child has SPD or something else, if anything. We have known about Patrick's sensory issues for a couple of years, even though he was officially diagnosed until recently. Coming to terms with "he actually has it" vs "he is just a child going through a phase" was somewhat easier for us because we have seen a scan of his brain. His MRI actually showed a somewhat messy and underdeveloped cerebellar vermis - the part to be believed to control the way we react to things. Luckily for him and for us, it isn't affecting all his senses, but for the senses that are affected, well, let's just say I had a real taste of it last Monday, and it wasn't good.  We had been managing his SPD just fine -learning what to do and what not to do... but last Monday was rough. It's just so hard to see your child suffering and not being able to help.

Stay tuned for the next post, this is To Be Continued...

Whatever the mind can conceive and believe, the mind can achieve

I have written a number of posts where I've talked about all the challenges that we face dealing with our son's significant developmental delays. Keeping a positive mental attitude has been the greatest aid in keeping us going and keeping us hopeful of a brighter tomorrow.

I have been somewhat involved with the Napoleon Hill Foundation for a few years now, but it wasn't until I wrote my last post on October, that I realized that many of Napoleon Hill's keys to success are being constantly implemented on my family's life. As I wrote about the difficulties my son had matching the skills of his peers -and how I used to get sad and feel self-pity thinking I had in front of me a situation I could not control; and how, I slowly began to overcome my doubts and started to believe more in my son, in God, and all the resources we had available to us- I realized how much Napoleon Hill's philosophy was helping me help my son.

Coincidentally, for this 2015, the Napoleon Hill Foundation is writing on their weekly Ezine children stories (literature) that relate to Napoleon Hill's keys to Success. This was to me, another "sign" that the philosophy can very well be applied to children, to children like mine. I wanted more of that food. I wanted to learn more about the philosophy, and I wanted to become a lot more disciplined, too. You see, I have so many ideas to help out my son and many other parents around world, but I have struggled putting my ideas to work. Procrastination and not having a set schedule to organize my everyday life was getting the best of me, so looking for help I decided to start a Distance Learning Course with the Napoleon Hill Foundation.

The first week, we had to decide on our Major Definite Purpose. I knew what it was, but the necessary steps to accomplish it were vague. I never put too much thought into it, let alone write about it. But this time, the course required that I explained it, and by writing down my purpose and my plan to accomplish it, it became more clear. Realizing all the work and time required to accomplish my goal, it became clear to me that if I were to continue the way I had, I wouldn't get too far, or it would take me longer.

Like I said, I'm not as productive when I don't have schedules/deadlines, so I had to start there. Who says stay-at-home moms don't need schedules? And by that, I don't mean just writing down the Pediatrician appointments, school meetings, soccer practice... I mean, having a set schedule, from the moment I wake up, to the moment I go to bed. From the weekly time I have to set out to work on my blog, to read, to spend just in myself, to the time I need to spend sitting down (or running around) with my children and forget about everything else. From the time I need to spend doing house chores, groceries and cook, to the doctor and therapists appointments, and to the time I have to invest to accomplish my Major Definite Purpose. Of course there is time for improvisation, too -that free time where nothing is scheduled and I can just be spontaneous and do what I want... or what is needed.

Kids like Patrick, as it also happens with kids who have Autism, benefit significantly from schedules. As a matter of fact, not having a schedule on their lives makes them uneasy and uncooperative. I have known this for awhile but I don't know why on earth it took me this long to do something about it. But we are on tract now. I'm wearing the Positive Mental Attitude hat, and this time I'm actually working towards my goal, too. You will hear from me more often, and you will see good things are coming for the Ocular Motor Apraxia community. If you want to get involved, just send me an email, because I will need help! I'm committed. My son is my motive, and I'm going to make it happen, because like Napoleon Hill said: Whatever the mind can conceive and believe, the mind can achieve.

Cheers to a better, brighter and healthier 2015!