"This is Amazing!"

Patrick was adopting a destroyer mode lately. It was as if every toy or art supply was asking him to destroy it, or throw it, or make an absolute mess with it just for the sake of it. He also likes to make his brother upset all the time -on his defense, it's quite easy (and funny) to upset Robbie, so I feel like he doesn't do it to be mean, but he just simply enjoys it in a fun way. Whatever the reason, I had been raising my voice more than usual and getting upset at him too often that I thought we needed a break, in the form of a mommy/son fun time.

So we went to Six Flags.

I figured if we went during the week, it would be less crowded (toddlers aren't fond of waiting 20 minutes in line for a 1 minute ride) so I had him miss a school day and instead I took him on a date to Six Flags. If you know Patrick, you know he doesn't like heights and hates uneven and narrow paths. He can get panicky if he has to walk on a balance beam by himself, or at the edge of a sidewalk. You can see the scare in his eyes when we have attempted to put him on a bike. Even though he is almost 5, he is still really really careful when walking down the stairs or getting out of the car.

Knowing this, we used to think he would hate amusement parks, but before making that call, we let him try and judge for himself. We have made a commitment to not put limits on him just because of his health condition, so I think he had just learned to walk when we took him to a fair for first time. While he hated the carousel (he used to be scared of animals, specially fake animals) he loved the other rides. My husband and I were really amazed at how much he enjoyed his time at the fair, so we take him to fairs or amusement parks every now and then.

I took him last Fall to Six Flags but we couldn't get into too many things as it was more crowded and he was younger. This time, however, he was tall enough to get on some more intense rides (as intense as they can be for children) and those were his favorite ones! There was hardly anybody at the park so there was no waiting time, and we got to ride 2 or 3 times on his favorite ones. We got on about everything that was aimed for his age (luckily there were many rides) spending about 6 hours on a wonderful date.

This is the first time we go on these rides since his vocabulary improved enough to share his feelings. Like I said, I knew he liked these rides, but it was a whole other story to finally hear from him things like "this is amazing!" and "this feels good, mommy!"  while on the roller coasters.

I loved every second of it, even the time when we got stuck on a ride and I imagined ourselves on the local news while being rescued (it was fixed few minutes later without news or rescue team involved!) The great panoramic view from above allowed Patrick to see all the rides near to us, so instead of panicking, he began to point at the rides he wanted to ride next. "I want to ride that one!" "I want that one, too!" "Look, mommy! That one! Thaaaat one!" As he was doing this, I couldn't imagine a better person to be stuck on the ride with.

I loved every second of it, even the time when he cried and cried because he wasn't allowed to go on the crazy big rides for adults. I was happy to see him so upset about it because I'm an adrenaline junkie, or at least I used to be when I was younger, and his father is not and never was. So seeing him so upset about not being able to get on those rides made me feel like he got that from me, that he is like me, and that we can have so much fun at these rides when he grows and is allowed to go on them. I look forward to it already!

It was lovely, refreshing, fun, peaceful, blissful, and all the positive feelings you can think of. Towards the end we played one of those games where you shoot a target with water, and we won 2 superhero capes. He was so excited to win and to wear his cape. As we were leaving, he looked at me and said "mommy, I want to run". I agreed, and he ran and ran so happy with his superhero cape pretending to be a superhero. As I was trying to catch up to his fast running, he came back to me and began to run around me. I told him he was my hero, then he stopped to ask me to put my cape on. I take that as his way of telling me that I'm his hero as well =)

Indeed it was amazing. Indeed it felt good, son. 

You made it so.

The process of learning -Robbie vs Patrick

I hope the title doesn't sound like I'm making this as some sort of match or race between Robbie and Patrick. What I mean with the "vs", is the difference, as in how one learns versus the other one.

It's very different.

Ever since Patrick was a baby, I could tell that he was very passive compared to other kids. Patrick would happily spend long periods of time sitting on my lap without any desire of going anywhere else. Sometimes I would sit him on my bed, with a few toys around him, while I was getting dressed or cleaning the bedroom, and he wouldn't move from there. I remember when I went to Mexico to visit my family (Patrick was 1 year old) I was feeding him a snack, and he was sitting on a table. I left him there for few seconds to grab a napkin and when my mom saw us she got upset, because she thought Patrick could fall off and get hurt. But I knew Patrick wasn't going anywhere. He just wouldn't make any effort to go anywhere.

We had to teach Patrick how to roll, how to stand up, how to reach for objects, how to crawl, how to walk. Any other parents would say, well, I taught those things to my healthy kid, too, but the thing is, we had to push him, a lot, really a lot, well beyond the milestone mark, until he finally did each of them. We taught him how to eat, how to drink from a straw or sippy cup, and how to everything I can think of.

Robbie on the other hand, couldn't be left alone more than one second on a couch or bed, let alone on a table. At 6 months of age, he moved, and moved fast. As a baby, he didn't like to spend more than a couple minutes on my lap, and while he was on my lap, he was usually looking for something to grab, or simply just trying to climb to the top of my head. Robbie started to roll over just shy of 4 months of age, he was crawling at 6 1/2 months and walking by the time he was 11 months. I remember the day when I went to pick him up from his crib and there he was, standing up! He is talking up the storm now, and is even saying long sentences that Patrick, being 2 years older, can't still put together.

But what is most interesting about this, is not the fact that Robbie learned these things quick, but the fact that I didn't have to teach Robbie any of this. It's amazing how these things are so natural for human beings, at least, for most of us. Robbie had the curiosity to reach for things, and he figured out how to reach them, without waiting for someone to teach him that he could do it. It's in his nature.

I knew Patrick was more "calm" than our friends' kids, but it was only until I had a healthy baby 24/7 that I realized the huge difference in the process of learning between Patrick and most healthy kids.
This used to make me worry, because I know I'm not always going to be around to teach Patrick how to do things. As he grows, he is getting better at coming up with solutions and ideas on his own, however this process is going slow.

On the bright side, he is now more able to do certain things because of his interest to imitate. When someone is doing something totally new (and exciting) to him, he will just observe, carefully, and then he will imitate or at least try. This is how he learned to open gates, doors, pretend to use tools like daddy and pretend to clean like mommy.

Patrick has this eager for doing things that are meaningful and helpful to others. He is particularly interested in performing chores and activities that the adults around him perform - I know my husband can't wait until the boys get a little older and can begin some real yard work! However, while Patrick is a great helper, Robbie has absolutely no desire in helping us with basic things around the house, even though he has the ability to do it. Funny how things work!

I hope Patrick is able to find people that are willing to be patient with him along the way. I hope he meets friends and teachers that will be able to see that even though he struggles at coordinating his smart brain with his uncoordinated body, he is a nice guy who is always happy to help you in any way he can.

Those moms who are not my child's mom.

This year, I would like to salute all the women who take special attention and care of my son, and all the other children with special needs. The therapists, the special education teachers, the counselors, the doctors, and the social workers that have contributed to the happiness of my son and my family.

They are mothers, too.

But not the mothers of my son.

As much as I enjoy being a stay at home mom and encourage other mothers of young children to do the same if they are financially able to do it, I have to say, I'm very much thankful for the ones that choose to balance work and family. There are jobs that are just naturally meant for women, and most of those jobs involve interactions with children, because we are more tender, softer, caring, loving... motherly.

I love Patrick's preschool teacher. She is such a great advocate for my son. I know she truly cares because she gets so excited at every one of his milestones; she is concerned when things aren't going so well, and she has been a great supporter that knows how to handle my sensibility and worry when we are in the middle of an IEP meeting.

One day we were having a conversation about trivial things, and she mentioned something her son did. There, I was reminded that she is a mother, too. That she has some of her own, yet she spends her mornings with my son and other little ones with special needs, helping them every step of the way. I'm so thankful she chose to balance work and family.

Patrick's private therapists at the therapy center are very young. I assumed they were either single or had recently married without children yet. One day, I noticed one of his speech therapists was pregnant. A few months later she said she was going to take 6 months off to be with her baby, but she would return to work part-time afterwards.

Another therapist had to move back to her hometown, as she and her husband were getting ready to start a family, and they figured that being close to her parents and siblings would make things easier for her to balance work and family. Her replacement, was a young woman who had been on "maternity leave" for the past year.

These three therapists are so bright, smart, fun and incredibly loving; they have contributed tremendously to Patrick's improvement, and I'm so thankful they all are choosing to continue bringing their expertise and caring personality to all the children like my son, who need just exactly that.

Often you hear this battle of stay-at-home mothers vs working mothers. Blog posts and articles supporting one and trashing the other one. I love being home with my little ones and I hope to continue doing this for a few more years. But I'm glad for all those moms who decide to help other moms like me, by rendering an exceptional service to our children and our families, even when that means they have to sacrifice a little time with their very own children.

Please don't even think we take any of your time for granted. You have impacted the lives of hundreds of special children, who today are able to say a word because of you, to take a step because of you, to socialize because of you, to manage tantrums because of you, to keep trying because of you.

Thank you for this and all you do.

Happy mothers day.

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.