Patrick made a friend with OMA

On my last post I mentioned I recently joined a Facebook group for people who have Ocular Motor Apraxia. Right after I joined the group, I asked if anyone on there lived in the area, because I was hoping to do a play date and get to learn more about what other people in my area are doing to help their kids.

It turns out, out of the 300+ active members of the group, the person who told me about this group and myself are the only ones living in the area. I realized then, as people were commenting, that many of them don't even live in United States. However, one person living in North Carolina said she and her family were coming to DC to visit some friends and would like to meet with us. The mother and I started an email exchange and we decided to have them over at our house. I was curious to ask her tons of questions about her son, but I figured it was best to wait until we met. Finally the day arrived, and we met at our house. We spent around 3 hours talking and discovering how many similarities our children had.

To begin, our OMA kids are boys. They also turned 3 this year (Patrick being older than Brendan by a couple of weeks). They have one healthy brother (Patrick's is younger by two years, Brendan's is older by almost two years).

In the ways they have developed, there are also similarities. Patrick and Brendan walked around the age of two, have same level of speech delay, a bit of balance and coordination issues, their feet pronate and so they both wear the same type of braces, and neither one have had an specific diagnosis other than Ocular Motor Apraxia. Other areas seem to be perfectly normal in both kids, with the only difference being that Patrick has some constipation issues, while Brendan's head thrusts some times. Brendan seems to be somewhat ahead on fine motor skills, while Patrick seems to be somewhat ahead on gross motor skills. Neither one of them is potty trained, although neither one of the parents have tried too hard... we are kind of waiting for them to show that they are ready so we can start the transition.

Their likes and habits are similar, too. When I opened the door, my husband was in the living room waiting for them. I tried to say hello to everyone and didn't pay attention to something my husband did: As Brendan was coming into the house, his tongue was sticking out a bit, holding it between the lower front teeth and his lip, just like Patrick does. My husband told me later that when he saw that, he knew immediately that of their two boys, Brendan was the one like Patrick. As we chat through the afternoon, we learned that they both enjoy water, cuddling with the parents more than the usual, are sweet, and good brothers. They both recently discovered they don't want to be dressed so it's a battle putting clothes on them. Neither one is a fan of the TV, but both love music. While the siblings were playing and acting like nothing was going on, Brendan and Patrick knew something was going on and they proceeded to act with caution. They were checking out the whole situation before they decided to start playing. And only after playing for awhile on their own, they decided to approach each other. Talk about similar personalities!

Brendan has a very nice family. I was very excited to see both mom and dad totally hands on. The way Brendan's parents have dealt with his condition, is the same way we have dealt with Patrick's condition. We both know very little about their diagnosis, and even though that was a burden at the beginning, now both parents feel that's actually an opportunity to not let our kids be defined by an illness. We don't know what to expect, so we take care of the obstacles as they come, if they come. We are trying to raise them as if they were two perfectly healthy children, but of course, not losing sight of their small disadvantages, like speech delay, for which we take action and help them with whatever is needed.

Brendan hasn't had an MRI, but I have the feeling that if he had one, his brain would look almost identical to Patrick's. As much as I wish there were not other children with rare disorders, it's also comforting to know that there is someone out there so similar to your son. That are parents out there going through the same exact thing you are going through. This must be a gift from God. At some point I was going bananas, because I felt that either there were healthy kids, or there were very sick kids. No kids like Patrick. The kids with OMA I learned about online, also have other diagnosis, symptoms, conditions... that Patrick doesn't have. Patrick's development is a little slow, but he can do anything and is very healthy otherwise, so I feel blessed that we found a friend for Patrick, just like him.

We all find friends we can relate to. With some, we have same likes in music, with some others is politics, or religion, or hobbies. Think of every friend you have and you will find you have something in common with everyone of them. Patrick just met a friend that has almost everything in common, even that rare thing in the eyes called Ocular Motor Apraxia. I'm looking forward to see how our kids develop, and if their likes and hobbies continue to grow similar. I'm looking forward to more play dates with them, and while we are some miles away and may not be able to see each other too often, I know we parents will do our best to keep the friendship to provide our kids with opportunities to spend some time together every now and then.

Merry Christmas Brendan and family.

Ocular Motor Apraxia Research by UW

A couple weeks ago I received an email from a person who came across my blog, who has a child with OMA and happens to live near where I live. Actually, our kids have even visited the same doctors! The email exchange has been really helpful to me so far, as the woman was kind enough to let me know about a facebook group for people with Ocular Motor Apraxia, and mentioned to me a research on Joubert Syndrome that she is participating on.

The Hindbrain Malformation Research Program, is performed by the Department of Pediatrics in the University of Washington, and they are currently receiving cases from people to examine. As I mentioned in one of my earlier posts, Patrick was originally diagnosed with Joubert Syndrome by his Pediatric Neuro-Ophthalmologist, but after the MRI was performed, the Neurologist ruled out Joubert Syndrome. This study goes beyond cases of JS, reaching to brain malformations like in the Cerebellar Vermis, so I have contacted UW about Patrick. They are requesting his MRI from Children's Hospital and after reviewing it, they will let me know if Patrick qualifies to participate in the Research.

I believe I have mentioned a few times before how fascinated I'm about the brain and the way it works, so anything, anything they are able to tell me after reviewing Patrick's MRI I know it will be so helpful I can hardly wait. This also means that if Patrick is found eligible, we will be contributing in the research, helping doctors to get closer to the answers people like us have been asking for a very long time.

If your child or you have OMA, or have had an MRI performed, with the results indicating any type of brain malformation, I encourage you to contact UW about participating in the research. One of the most frustrating things about Patrick's condition is that there is so little information about it. OMA is a rare disorder, there aren't many people out there with OMA, and so not much research has been performed. But OMA exists and there are thousands of people in the planet trying to find answers to their many questions. If this research can help to answer even a couple of those questions, I say it will be already worth it. But this research can't be done without your help.

My communication with UW has been very smooth so far, and they are very prompt to respond, so at the very least, I encourage you to contact them if you would like to find out more about the research. I will keep everyone posted about Patrick's eligibility and what UW tells me. Let me know if you participate!

Loving our special children

I have mentioned a few times how I'm so glad that Patrick's developmental delays aren't severe, how glad I'm that he doesn't have Joubert Syndrome (a common thing in kids with OMA) and how glad I'm that most of his current health issues will disappear or at least diminish as he grows. I know that many of you who come across my blog, have children with Joubert syndrome, or with severe development delays, or with a health condition that won't get better after awhile, and that, perhaps, may get worse. Please know that by saying that I'm glad that Patrick isn't in that situation, your situation, I'm not trying to say you are in a bad situation. I'm not saying that I feel sorry for you and that you should feel sorry for your child and for you. Not at all.

I do have a child, Robert, who is healthy. He doesn't have any of Patrick's medical conditions. Knowing that Robert is healthy makes me so happy I feel like celebrating. It excites me beyond words to see him developing like most babies. I giddy when he learns a new trick very quick and on his own, like crawling, pulling up, giving steps with support. I'm a proud mamma when I see he is even ahead in the game compared to other babies his age. But, does Robert's healthy development make me feel sorry for Patrick? Does this mean I love Patrick any less? Does this mean, that I'm not proud of him? Do I have to live frustrated about his condition? Are we in a bad situation because of Patrick? Should I regret having him? Not at all. I love Patrick with all my heart. I would give my life for this kid if I had to. He is my favorite toddler in the world, and I can't believe I'm this lucky and blessed to be his mother. He brights my days, just like his brother. Just like his brother. He is my son, just like his brother. And that's all what matters to me.

And I know that's all what matters to you, too. I know you love your child dearly regardless of how he was born, because he is your son. I know, too, that as long as you love your child, there will always be a worse possible condition, for which you are thankful you are not in. You see, I love Robbie and I feel blessed to know that he is not in Patrick's condition. And you know what? I love Patrick, too, and I feel blessed (yes, blessed), that he has Ocular Motor Apraxia, without having Joubert Syndrome. I'm sure you love your son, and so you feel blessed that he has Joubert Syndrome, and not cancer, right? I thought so. You love your daughter, and despite of having cancer, you feel blessed that she is still fighting for her life. You love your son, that may now be death, but feel blessed that you got to have him once with you. Because having a child, regardless of how terrible his health condition is or was, will always be better, than to never have had him at all.

If you are a parent, then you know that you are in the best situation possible, and that's to be the parent of your child. Even if you were blessed to feel him only in your womb for a few months, you have experienced motherhood, and that's wonderful. God blessed you by letting you carry one of his special creations. God trusted you to be a father to one of his little angels. You are in the best situation. Regardless of what you suffer now, regardless of your struggles and your fears... no illness can out-weight the blessing of having someone to call your child. And along these lines, there is a powerful story that was featured on ESPN last year and that regained popularity on social media recently: Heath White, was a successful man whose life turned upside down after finding out that his wife was expecting a baby with Down Syndrome. He asked his wife to have an abortion, but she refused, thankfully. Weeks after the baby is born, Paisley touched his father's heart, making him change from being a truly egocentric person, to a loving, caring and proud father. You can learn more about their beautiful story here.

Sometimes I wish Patrick didn't have OMA, like I'm sure you wish your child didn't have Joubert Syndrome, or Down Syndrome, or Cerebral Palsy. These health conditions should happen to bad people, not little innocent babies. There are times when we wish they had been born perfectly healthy, there are other times when we accept they are sick, but wish they got cured already. And that's OK. Just make sure that the times that abound are the ones when we value the better person we have become, because their special needs were craving for that better person.

Had my son been born a perfectly healthy child, I would have never learned to treasure his sibling's first steps as much as I do. Had my son been born a perfectly healthy child, I would have never tested my strength, my patience, my perseverance, in the way I have. Had my son been born a perfectly healthy child, I would have continued to be a religious woman, without knowing what truly means to have faith in God. Had my son been born a perfectly healthy child, I would have never met all the special mothers, and wonderful therapist and friends I have made thanks to his condition. Had my son been born a perfectly healthy child, I would have never started a blog, with the only purpose of helping someone I don't even know. Had my son been born a perfectly healthy child, he wouldn't be him, and that would be a shame.

Antibiotics during pregnancy: Cause of Patrick's health issues?

Last year, I wrote a post titled Could I have prevented Patrick's health issues?  The conclusion was that I couldn't have. Fast forward to today, there is a chance that I could have prevented Patrick's health issues after all.

A few months ago, I came across an article that talked about speech delay, something we have been dealing with in the past months. The article talked about a study performed to find out how antibiotics affected children while in the womb. The fact is, I have read in MANY places how antibiotics during pregnancy could cause most of the health issues that Patrick currently has, but I really didn't pay much attention to any of that simply because I didn't take antibiotics during my pregnancy. This time, however, in the study performed, women who took antibiotics up to one month before conception where considered as "having taken antibiotics during pregnancy".

I took antibiotics within one month before Patrick's conception.

On February of 2010 I got sick with a bad cold. It was a Saturday when I was feeling the worst so my husband took me to an Urgent Care. It turned out I had pneumonia. The doctor wrote a prescription for an antibiotic and sent me home. The medicine was making me feel very nauseous and sleepy but after a few days I started to feel better. I made an appointment with a family care physician anyway, whom I saw the following Monday and who has become our family physician ever since.

Couple months after the incident, I found out I was expecting my first child. I was (and am) completely sure that I didn't take the medicine while being pregnant so I knew Patrick couldn't possibly be affected by it. That's what I had believed all along up until the day I read the article. To read that women who took antibiotics up to one month before conception were considered at risk gave me the chills. Patrick was believed to be past his due date when I was induced, but once he was born, the doctor said that he was actually born two to three weeks early. So we don't know for sure how many days are from the last dose of antibiotics to his conception day. It may be slightly over one month, or it could be couple weeks.

 Also, I recall that when I saw the family physician, she said she didn't understand why the doctor at the urgent care had given me that particular antibiotic, because it was so strong that the symptoms are awful, and so she didn't like to prescribe them. So there is a possibility that with the medicine being so strong, it could have taken longer for my system to finally be antibiotic-free. This makes me so angry and sad, because regardless of whether Patrick was affected by it or not, to know that antibiotics could potentially harm babies that are still to be conceived makes me wonder why doctors don't have the courtesy to tell you so. They sure tell you to not take certain medicines if you are pregnant or breastfeeding, but they won't tell you to wait at least a month or two after the last dose to get pregnant, specially with drugs that could potentially harm the baby in the womb.

I guess I will never know for sure whether or not taking antibiotics before conceiving Patrick was the cause of his health issues, and while some may think there is not point on worrying about "what if", I thought it was important to write this to make women aware of the dangers of antibiotics during pregnancy, even if you aren't pregnant just yet.

I would have never guessed it!

A few months ago, a friend from college came to USA on a tour that included New York and Washington, DC. Since I moved to this country 7 years ago, I rarely get to see friends from my hometown or from college, so I was super excited to see her while she was in town. We were able to spend almost a whole day together. We took her to see the monuments (my husband loves giving a monument tour to friends and family), I brought her to my house and we had lunch nearby, and we also enjoyed a stroll with the kids in a wonderful evening in Washington, DC. It was so much fun to see an old friend, but it was also a very comforting visit, here is why:

We studied Communications together, we were in the same class for 4 years. Anyone you ask, they will tell you she was one of the smartest girls in the class. She had briefly lived in United States, so she speaks both English and Spanish. She lost her mother at a young age, but if anything, it gives the impression that such experience made her acquire a "motherly" attitude towards her friends: always looking out for everyone, and always willing to give you a hand. She is a good speaker. Never afraid to stand in front of an audience and talk, and she always has something to say, as she is a very well informed woman. She loves to travel around the world, and enjoys her current job as wedding planner at the Palace Resort in Cancun, Mexico. I was very impressed to hear the jobs she has held since she left college, and overall I could say she is having a very successful and happy life.

She asked me if I was planning on teaching my kids both English and Spanish, to what I said yes, and I added about how we put a temporary hold on Patrick, because he has speech delay, so I'm mostly interested in getting him to say basic things in our home's primary language (English). Then she said the words I never imagine I would hear from her: I had speech delay when I was a kid.

Then she went on to telling me about her numerous speech therapies and occupational therapies, all the medical appointments, the things she couldn't do as a child, her fine motor skills issues, her development delays... and all her challenges. The more she talked, the more I could relate -or Patrick, for that matter. She was familiar with all the things I told her about him, and I just couldn't believe she was telling me she went through all that herself. She, the girl that has absolutely no problem giving a public speech (and is good at it), the girl who is successful in her Public Relations job providing costumer service in an international arena.

She gave me so much hope. I would have never guessed it. How's it possible that she had so much trouble (medically speaking) growing up when she was a child, but now there is no resemble of it? What developmental delays? I could easily joke (not really) that she was actually way ahead than most in my class. She looks and is perfectly healthy now.

One day, my little boy will be a grown up man, and will tell a friend about his developmental delays and the medical issues he had as a child, and the friend he is talking to, will look straight at him, with a sincere surprised expression in his face and say: I would have never guessed it! I know in my heart this will be possible one day. At moments I felt like I was kind of hoping too much for Patrick and therefore expecting too much from him, but she overcame her obstacles, and the end results are priceless and flawless. Now, more than ever, I'm determined to help Patrick overcome his very own obstacles, because thanks to God they are temporary.

Cheers to you, my dear friend!

Preschool Update

Patrick has been in school for one month, so I figured it was time to give an update.

The basics:

• Patrick attends school Mondays from 9:00-11:30 am, and Tuesday-Friday from 9:00-12:15 pm.
• The bus picks him up around 8:35 am, in front of my house. Only preschool children are in it, and there are 2 adults (the driver and another lady that makes sure the kids are behaving). On Mondays, he gets dropped off around noon, and T-F, around 12:50 pm.
• He eats one snack everyday, and T-F he also gets lunch.
• There are 7 children in his special class, including him, and all are around 3 years of age. They are attending from various reasons, ranging from a few developmental delays (like Patrick), to other medical issues like Down Syndrome.
• The school is only couple miles from my house, and is part of Fairfax County Public School.
• The teacher and the parents have a communication system in which we use a notebook to write any notes, questions or concerns. Patrick is the transporter taking the notebook from school to home and back the next day.

 The cons:

• It was painful to say good-bye the first day. And the second and third. I could tell he had been crying at school, so that was making me sad as well. 
• Patrick is coming home really hungry, which tells me he is not eating his lunch. As you may know, nutrition is something we have been dealing with, so it's very important that he eats well during the day!
• He takes a quick nap in the bus on the way home, which means he doesn't want to take a nap in the house anymore! 
• The first couple of weeks, his behavior had changed for the worst. He would come home and try to hit his brother, be extremely loud, messy... luckily it seems to had been just a phase, that hopefully won't comeback.
• The worst part is, I can't see what he is doing at school!! I would love to see how he is behaving, how he interacts with his teacher and friends, what arts and crafts he is doing, how he plays, what he learns... I'm not asking to be there everyday, but I would love to sneak in just once, to see him in his new environment. 

The pros:

• He is saying more words!!! The best part is, he is pronouncing some words better. Remember how he would say "na" for Sam, and "ni" for Tim? Well, after a week of being in school, he started saying Sam and Tim perfectly!! There is still no conversation, and is still complicated for anyone who is not mommy and daddy to understand him, but, I'm seeing the biggest and fastest improvement ever.
• There is a speech therapist, a physical therapist and an occupational therapist evaluating the kids and making suggestions for parents and teachers. Patrick actually receives a one-on-one session with the PT once a week. 
• While Patrick is in school, I get mommy and baby time. I want to make sure I give Robbie his very own time, just like Patrick had it when he was the only child. Patrick loves being around baby and me, so unless he is sleeping, I can't enjoy cuddling and playing just with Robbie, at Robbie's pace. I have to say, Robbie misses him a little.

• I can get more things done around the house, and outside the house! It's easier doing groceries and running errands with one baby than with a baby AND a toddler! I know, mothers of 2+ children do it, but I'm still practicing!!
• Before he started school, we would do some arts and crafts, or specific activities that would improve his fine motor skills. Now that he is in school, he gets to do that in school AND at home. Loads of practice!!
• He is learning new things, faster. He is now starting to count, is coloring better, likes dancing and gesturing to kids tunes, and is doing all the things I tried to teach him but that he wasn't much into it. I guess that now that he does these things with a group of little people just like him, it's a lot more fun and so he wants to do it, too!

• Patrick is interacting everyday with children with special needs. This means that his first school friends are children that are often marginalized, stigmatized and bullied by other children. But these children will be Patrick's friends, he will learn to love them, care for them and realize that the true value of one person is not in the things you can or can't do, but in your soul. We can tell and teach our kids that, but he is living it, everyday. He is witnessing first hand!
• At first I thought that by being in a classroom with children significantly behind in their developments, would make Patrick's development slow down or at least not improve as fast as if he was interacting with kids that are ahead of him. As much as I want Patrick to be inspired by other kids and get motivated to do more things, I think is also a blessing if Patrick could be the one inspiring those kids and motivating them to walk, talk, color, sing and dance!
• Best part is, he loves going to school. He wakes up every morning (even over the weekends!) so excited to get ready and take the "bu" (bus) to go to "coo" (school). 

Hands down, I recommend that children with special needs are enrolled in activities that stimulate their imagination and willingness to do things. There are only so many activities a week I could enroll Patrick in, mostly because specialized education is expensive and rarely covered by insurances. So I'm glad we are able to receive these services from the County at no cost (well, our taxes are paying for it!) 

I have some issues with the school system the way it is and where is heading, that I'm even considering homeschooling my children, for some of their school years (when they are not attending Catholic School). I will talk more about this later, but I can say right now that the 3 hours a day he spends interacting with children, receiving specialized attention and direction for his special needs, will go a long way in improving his developmental delays and making the difference that I can't provide at home by myself. I strongly recommend it!

Overcoming Behavior Issues: Speech Delay

Patrick began babbling and saying "dadada," "mamama" and the usual cooing, around the same time other babies his age started. Before our kids were born, his dad and I decided that I would teach our kids Spanish and he would teach them English, and as Patrick was growing, I started to teach him a few words in Spanish. I had read somewhere that kids from bilingual homes usually are a little late on talking, so I guess I kind of expected all along that he would be a late talker. Late talker as in talking a few months after the average child.

Patrick, as of today, has the vocal skills of an average 18-20 month old baby. Patrick is 3 months short of being 3 years old. That's too "late" for what I had anticipated. While talking comes and develops naturally for most children, for other children, like Patrick, it doesn't.

I think it was until he was a little over one and a half years old, that I realized that his severe speech delay was looking like a real possibility. By then, we were all aware of his Oculomotor Apraxia and hypotonia, and the more I learned about his developmental delays, the more I realized "speech delay" was part of the bundle. When Patrick was 2 years old, his vocabulary was limited to mommy, daddy, babba (bottle), and to the sign language for the word "more." In the video below, Patrick is shy of 2 years of age.

As Patrick was growing, his frustration for his inability to talk was growing as well. The older he was getting, the more he was understanding, questioning, doing, and desiring. But he couldn't express any of that. I can only imagine how helpless one can feel in a situation like that. This was the reason number one to his screaming. You know how babies cry when are cold, scared, hungry, sleepy, thirsty, uncomfortable...? Well, Patrick, as the toddler he was, had turned that cry for a scream. He was tired? Scream. He was thirsty? Scream. He wanted to play? Scream. He didn't want something? Scream. He wanted something? Scream. Scream. Scream. Scream. The constant screaming would make me upset, which would then make him even more upset, and it would turn into a vicious circle from which I couldn't figure out how to get us out.

About five months ago, Patrick's vocabulary was limited to 6-8 word approximations, which made his therapists suggest to add more words in sign language to ease that frustration. So Patrick learned the sign language for more, I'm done/I don't want, and please. Ball. Ball. Ball. Ball. Ball. Ball... I had to repeat it dozens of times a day, while we were playing with the ball, until one day, there was finally a "ba." And that's what we had to do with many other words. Today, Patrick has about 40-50 words, most of them being mere approximations (nani = night night, tide = outside or inside, memi = Mary, nana = grandma or banana, didi = Jesus, na = Sam, pun = spoon, bapi = Patrick, pi = please...)

We had to teach him to point at things, too, to make it easier for us to know what he was talking about. Thankfully, he had finally learned to walk, so we taught him to hold our hands and take us to wherever was what he wanted (if he wanted to drink something, he would take us to the kitchen; if he wanted to go out, he would take us to the door, for example). He moved from twice a month therapies, to three times a month. Also, I attribute the improvement on his speech to the Omega 3s and the changes made in his nutrition that I talked about a few weeks ago.

Many children these days are late talkers, and I believe there shouldn't be any pressure on making them talk when they are not ready. However, Patrick was ready, he just didn't know how to. How do I know he was ready? Simple: It was affecting his daily life.  His very own self was ready to communicate, but his mouth couldn't do it, making him upset and turning aggressive towards others. I can tell that when we let him know that we understand what he is trying to tell us, it is easier for him to accept a "not right now" if it is something that he wants and we can't provide at the moment. He is more involved in making decisions of what he wants to eat or what he wants to do, letting us know when he has had enough of something... and all these moments go by without meltdowns. The screaming, throwing and hitting are very rare these days, and I'm so happy to have my happy Patrick again.

Speech (or lack of) wasn't only affecting his mood and behavior, but was affecting his learning progress as well. Let me share a fond memory from my Epistemology course when I was in college: We were asked to read a children's book called Pixie, by Matthew Lipman. The book is about a girl who, among other things, asks too many questions.  The funny thing is, that after the class read the book, I was dubbed Pixie (and I was called that for the rest of my college years!) because they said I asked way too many questions. Ha! Of all the numerous books I read during my school years, I think is a marvelous coincidence that this particular one is to this day stuck in my head, perhaps thanks to the nickname I got. But whatever the reason, the fact is that Patrick's new difficult behavior was making me think a lot about Pixie.

Pixie inquires into the connection between language and things in the world, which give meanings to everything in our daily experiences. In other words, Pixie is meant to show us how a child makes sense of the world as she learns new words. Children like Patrick, who find it difficult to express themselves verbally, will have problems learning things because of their inability to refer to them. Whether is with word approximations, sounds, sign language or pointing at objects, we taught Patrick how to refer to things (objects, emotions, people...) and ever since, he seems to be learning a great deal of things at a faster speed as he ever did.

Everyone keeps telling us that he will talk more once he starts school. I do believe this because the very first words Patrick said were during a trip we made to Mexico. My family is very talkative, and there are always a lot of children around, so there was non-stop talking all day long when we were down there, which I think got Patrick motivated. He is still unable to put two words together, however, I think it's emerging now. Couple weeks ago, he spent a few days with his very bright and talkative friend Jackie (happy 3rd Birthday, Jacqueline!) and ever since that visit, he has been making an effort to put two words together: "acusacu bobo" which means: __________ Lobo (something about our dog). Couple days ago I brought an Elmo toy into the room where he was playing, and as he saw me he said "momo, si" (Elmo, sit), as he was pointing at the floor where he was sitting.

Jackie and Patrick playing baseball

Jackie and Patrick watching the Gorilla at the Zoo

Awhile back I was anxiously awaiting for the day when I would finally hear from Patrick "I love you, mommy." I'm not anymore. I know he loves me. What I don't know is what's his favorite animal, what he wants for dinner tonight, what he wants to be when he grows, what makes him sad the most, what he thinks of his little brother. When the day comes that he talks, God knows I will let my old "Pixie" get the best of me, and will ask him a universe of questions, because I know there is so much in that brain and in that heart of my little boy, that I just can't wait to know all about him!

About this blog and the blogger

Blogger's Background
I'm not a doctor, or a therapist, nor an expert on any of the medical issues I talk about here. I'm, however, the mother of a child who has all the medical issues that I write about.

Blog's Sources:
Most of the things I talk about have no source cited. The reason is simply: I didn't read X or Y somewhere specifically. I got to X or Y conclusion by reading many things, in many places, talking to Patrick's doctors, working with Patrick's therapists. Helping Patrick myself. A statement on any given post was most likely the conclusion I drew from all these things combined.

Advises:
I advice you to try anything that is safe if you think it would help your child. The point is to try different things and to not give up. This whole blog is based on the experiences we are living by having a child with OMA and developmental delays. We have tried, failed and succeeded at one thing or another, and I'm passing on to you those very own experiences.

Advertising:
When I talk about products, I often link the products to Amazon.com. The reason is because Amazon sells about anything we can think of, and has reviews from buyers, and usually has lower prices. Being that said, I rarely buy a toy from Amazon. But I can't link the toys to Goodwill, consignment sales, or craigslist, where I buy most of the toys my children have (talk about recycling and saving money!). So if I suggest to purchase a toy or a book, or any product or service, please know that I'm not being remunerated by the company or the seller to promote its product.

About the posts:
All the posts I have written can easily be searched by date and topic. On the top of the left hand side you can find the archives categorized by month. If you are looking for a topic in particular, let's say, hypotonia, you can click on the word "Hypotonia" under Labels. That will take you to all my posts where I talk about hypotonia.

Most of the posts are single posts, but I also have "series" (Overcoming Low Muscle Tone and Overcoming Behavior Issues, as of today) where I write a number of posts on a specific topic. For example, the Overcoming Low Muscle Tone series consisted of 7 posts with advises on how to help your hypotonic child. However, I make mention of hypotonia in other posts that are not part of the series (as of today there are 16 posts total on hypotonia, including the posts in the series.)

There are MANY things I leave out on the posts. I realize that if I got into too many details I would end up writing a book. So I try to keep it short (sort of) which takes me to my next point:

Contact:
If you feel like you are left with more questions than answers after reading one of the posts, please feel free to contact me, I would love to answer any questions you may have about our journey. Also, I would love to get feedback, and more important, I would love to hear your story. I want to share notes, hear what is working for you and what is not. Maybe your child is older and you can tell me where he is at, so I can get a better idea on what to expect. Maybe your child is younger and you have so many questions, but little to no answers. Please know I will be happy to help you any way I can.

Language
Please note that my first language is Spanish, so good chances are that you will find a misspelled word or two in many posts. I'm trying my best to not make mistakes but I still struggle with English, and I hope to get better at it the more posts I write.

Also, you may notice that sometimes I refer to your child as "he". There are two reasons: Hypotonia, Speech delay, and Oculomotor Apraxia are more common in boys than girls. Also, this blog is based on my child's journey, who is a boy.

Purpose:
I started blogging about these medical issues primarily due to the lack of information on Oculomotor Apraxia. I figured there had to be other parents with the same problem, wanting desperately to know more about the subject. So I took on the task of documenting our appointments, advising based on our experiences, informing what I had learned from the doctors, therapist and books, and telling our story.
After I had written a number of posts, I found myself reading more and doing more to help Patrick, but not only to help Patrick, but also to have something to write in my blog. So writing this blog is not only helping parents out there, but helping me help my son.

Disclosure:
One year ago today, I started writing this blog. It's intended to be weekly, but at 36 posts, well, I wrote more like every 10 days. I'm not sure for how long this blog will be live, but I don't expect it to be for years. Even though I love writing, I also want to respect my son's privacy. I don't think he will be too thrilled to have all his medical issues and personal information exposed to his friends -when his friends are able to read and get access to the internet, that is. I think when that time comes, that's when this blog will have to be taken out of the public eye. In the meantime, I hope I can help as many parents as possible to get information about OMA and developmental delays, and hopefully help them be inspired by Patrick's journey.

A very special day

 I'm going to take a quick break from the Overcoming Behavior Issues series, to write about the busy day we had yesterday.

Patrick graduated from the Infant and Toddler Connection (ITC) of Fairfax-Falls Church. This is the therapies service that we have been receiving for almost two years now. I have made mention of the ITC in several posts on this blog, but to recap, here are 3 important points:

1) By suggestion of his neurologist, Patrick began receiving services from ITC when he was 1 year old. There is no minimum age, but the maximum age is 3, which he will be in November. Patrick will continue to receive tailored education for his special needs, but this time in a school setting. He begins classes in 3 weeks!

2) Patrick started with Physical Therapy twice a month. After a year of PT, it was suggested that he also took Speech Therapy, which he had three times a month. Due to the vast improvements in the physical area, Patrick stopped receiving PT about three months ago, and started receiving Occupational Therapy instead.

Patrick's Physical Therapist and Coordinator

Patrick's Speech Therapist

3) Each of the three therapists he had all this time, came to our house for an hour each time. Every 6 months he was evaluated and new goals were set. During that hour, we would play with Patrick to find out where he was lagging behind, and they would give me suggestions on what to do and how to help him reach each goal that was set.

The graduation was a very nice event. It went from 11:30 to 13:30 at the Van Dyck park in Fairfax, VA. The therapists, coordinators and office staff were there to celebrate the children and their families who had been working so hard all this time. My husband took the day off so the whole family was able to see Patrick receive his Diploma and the cute gifts that were given. Here are some pictures of the event:

So serious for the graduation photo!

Mommy, stop trying to make me smile!

Receiving gifts from the Mayor

Patrick was amazed by the guitar player. He played our song "You are my sunshine"

Bubbles!

Ham smile!

Patrick played, played and played non-stop!

Showing off his graduate shirt and the star he received from the Sheriff

 After the event, we headed to Great Waves Water Park in Alexandria to celebrate. Patrick loves anything water (baths, water parks, sprayground, hoses, beaches, pools... toilets and sinks!) so we figured a water park would be the perfect place to take him. Melanie (Robbie's godmother) was kind enough to gift the entry passes.

Great Waves Water Park

This area reminded him of his favorite Sprayground

Water, water, water!!!

Patrick made a friend

Robbie had loads of fun, too!

Daddy and Robbie playing peek-a-boo!

Robbie was exhausted at the end

Patrick is never tired apparently

Silly mommy made Patrick pose for this pic

Surfin'!

It was a very special day in our lives. I don't think Patrick would be where he is at without the help of his therapists. I have learned so much about my son and how to help him thanks to them. Patrick was a trooper the whole time since we started this journey, he has come a long way and we are very proud parents! We love you Patrick!

Overcoming Behavior Issues: Nutrition

Patrick is a skinny kid. He's always been above average in height. In weight however, was average or above average as a baby, but under average as a toddler. Patrick looks like my husband when he was a child, but with a darker skin tone, eyes and hair. We like to say that Patrick is a Mexican version of Tim. The fact that Tim was so skinny, but healthy as a child, made us think that Patrick's low weight was only a matter of genes.

Patrick was breastfed from newborn up to the age of 8 months. I think I could have done it longer but I had gotten back to work for a few months then, and it was getting more and more difficult to manage both. So I started giving him Similac. He started eating solids at about 6 months, but it was quite a slow process, which I'm relating to his low tone in the mouth (it was difficult for him to chew and swallow some foods). Patrick didn't pass stools everyday. Even when he was breastfed, he would go 3-5 days without passing a stool, but it didn't seem to bother him at all, so the doctor said we shouldn't worry. When he turned 1 year, we began to give him whole milk, and more foods were added to his diet. That's when I feel the real constipation problems began.

Without getting into too many details, I can say that he was in severe pain when trying to pass a stool. Because of it, he was eating less and less every time. We thought lactose was the problem, so we tried so many milks for months, from lactose-free, to almond, soy and coconut. The problem seemed to ease a little for awhile but it always came back. We took him to his pediatrician and it was suggested that we gave him Miralax. Miralax was doing the trick often, but I didn't like the idea of having a toddler taking medicine to be able to go potty. We also had to give him suppositories when the problem was really bad. So we kept trying things, like reducing the intake of bread and pasta and adding more fruit and fiber, reducing milk and adding more water... but nothing seemed to eradicate the problem.

Patrick started to be a really picky eater, occasionally eating amazingly well, but most of the times being chased to get him to eat. He loves everything eggs and enjoys fresh fruit and berries, but getting him to eat lunch and dinner is usually a battle. About a year ago, we tried adding Carnation Instant Breakfast to his milk, and it seemed to be working at first, but after a couple of weeks, he didn't even want to eat his fruit or yogurt snacks. The doctor figured that the Carnation was probably making him too full and instead of helping, it was making things worse. So we stopped the Carnation, and we continued to hope that each day would be one of those lucky days when Patrick happened to eat everything we gave him.

I got a wake up call when at one of his appointments we realized he hadn't gained weight in the months prior. And then after that we noticed he started to lose weight, so we made an appointment with a nutritionist and a gastroenterologist at Children's Hospital. They ran a number of tests, to see if he had any sort of allergies or intolerance to gluten (celiac disease), but everything came back OK, and we were told (again) that Patrick needed to be on Miralax daily. I still hate the idea of having him on Miralax, but like the doctors said, by trying to avoid to have him take medicine, he is not eating, hence missing out on nutrients that are important for his development. They were right on that, because now that he is passing stools everyday, his appetite is significantly better, so it's easy to get him to eat his veggies, fruits, meats and such.

He is still a picky eater sometimes, but most of the times he eats well. He is back to having Carnation Instant Breakfast and looks like he is slowly putting on some weight. Best of all, he isn't suffering due to the constipation issues. It broke my heart every time he had to go through that pain. But now I have my happy Patrick again. His mood is so much better now, which makes him be more willing to sit and play with me nicely for long periods of time, learning new things. The difference is amazing, like two completely different boys. We also added Magnesium: My husband sprays some on his skin at night few times a week, or we add Epson Salts to his bath. It makes him so relaxed, and a happy little boy.

I found in several forums moms talking about giving Fish Oil to their kids with developmental delays. Most moms then would say that their kids were doing significantly better (like talking more, or improved motor skills), however, some of them didn't want to attribute the improvements to the Fish Oil, but rather say the improvements were due to their kids getting older. I figured I didn't lose anything by trying so we added Fish Oil to his morning shakes. After a couple of occupational therapies, where Patrick played and behaved like a perfect little boy for the whole sessions, his therapist asked me what did I think had made the difference, to which I responded that he was eating significantly better every day. I told her about the magnesium baths, and then I told her about the fish oil. And as I said that, I heard myself saying "I'm not sure if that really made any difference though, maybe he is just getting older, hence more mature". That's when I remember these other ladies suggesting that the Fish Oil wasn't the real cause of their kids improvements, but only a matter of coincidence. I realized then that it couldn't be a coincidence that all of our kids happened to "grow and mature" when they started to take the fish oil. So I'm going to give Fish Oil its very own credit, too.

If you have a picky eater like mine, chances are his nutrition is causing some of the behavior issues you are dealing with, along with some of his developmental delays. A better nutrition didn't "cure" Patrick, but it's definitely speeding up his development. He isn't constipated any more so he is happier, and he is more often with a satisfied tummy, therefore he is willing to relax and pay more attention on how to do new things that were past due, like making puzzles. Instead of throwing the puzzle pieces to anyone who passes by, my boy is finally using the pieces for what they were made: making puzzles!!

Overcoming Behavior Issues: Causes

It's important to note that the behavior described in my last post wasn't just occasional, or typical of the "terrible twos". The screaming, hitting and throwing was an every day thing, occurring for the most part of the day. It was affecting his daily life, as he was unable to use his time for playing, learning and socializing, hence increasing his global developmental delay. It's also important to mention that the concern raised because of the environment provided to Patrick: A home with two loving and caring parents, with access to a healthy an age-appropriate fun lifestyle.

When all this "sudden" change of attitude happened, we were already receiving services from the Infant and Toddler Connection, and his therapists were very helpful in dealing with this issue. They insisted on asking me why did I think he was behaving one way or another. Understanding why Patrick behaved the way he did, was the key to help him improve his playing and learning process.

The first step in figuring out why was Patrick constantly throwing, hitting and screaming, was to become extremely observant. Every time he would scream, I needed to find out what was upsetting him. But it goes beyond simply knowing what he wants. You see, when he wanted to go outside, sometimes he would come, grab my hand and take me to the door. Other times, he would throw something at me for the same reason. So, we have the same kid, the same desire, but two different scenarios. What would make him act peacefully one time, but aggressively other times? To find that out, I had to observe what was going in his environment every single time he showed a bad behavior. Every time he hit someone, I needed to pay attention to the whole situation: What was he doing right before he hit? What was I doing? What is he throwing? What time of the day was more likely to do it? In which places? Around which people? Has he been sleeping well? Eating well? Any significant routine changes? Same for screaming. Same for hitting. Being able to answer all those questions, led me to answer the big question, why.

Four main reasons surfaced:

• Patrick is trying to communicate. Patrick's ability to understand is superior to his ability to execute and speak. This causes frustration. Loads of it. If he wanted to play with a child, he didn't know how to tell him, so he would hit him. If Patrick wanted to get my attention, he would come and throw something at me. If he was tired, or bored, he would scream. 

• Patrick's nutrition. Patrick has been dealing with constipation issues which caused a lack of appetite in him. He started to lose weight, to the point that he gained only one pound in six months, and lost that pound the following two months. We don't operate the same way when we are too hungry, or stomach sick, compared to when we have a satisfied belly, right?

• Patrick has sensory integration issues. Sensory Integration is the neurological process that organizes sensation from one's own body and from the environment and makes it possible to use the body effectively within the environment. Patrick doesn't necessarily have Sensory Integration Disorder to the full extent, but, he does process a few sensations a little different from most kids. 

• Patrick's medical condition. Patrick's cerebellum is slightly smaller and a bit disorganized as shown in his MRI. The cerebellum plays an important role in motor coordination, attention, language and regulates fear and pleasure. Patrick's behavior issues are not only limited to bad behavior, but also to "odd" behaviors, such as panicking when feeling fear, and feeling fear to random things such as small pets, or stuffed animals. 

Each one of these reasons deserves its own detailed explanation so expect a post about each bullet point in the upcoming weeks. In the meantime, if your child is dealing with behavior issues, start observing closely what is causing such behavior. Become a critical observant of your child just like I did, you may be surprised with the answers you will find.

Overcoming Behavior Issues: Patrick's behavior.

Patrick has improved so much in the past month. It's like someone took Patrick away and brought him back to me a year later, more mature, healthier, happier. But it all happened in one month, and it happened right here at home.

A little bit of background, Patrick was a super good and happy baby (read hypotonia = happines) up until last winter, when he became a very difficult child. I assumed that because he had learnt to walk, he would be all happy running everywhere, playing at the playground, making friends and learning a lot. There was a lot of running, yes, but paired with hitting, screaming and throwing, every single day, most of the day. 

Patrick's play was very immature, too. At 2 years of age, he didn't know what to do with puzzles other than banging and chewing on them. And that was the case for all of his toys, like cars, blocks, musical toys, learning toys... you name it. Patrick liked looking at books, but he didn't like hearing the stories. His favorite books were the ones with no stories, the ones that are meant to teach children a new vocabulary filled with just pictures of a theme: animals, body parts, baby things... no stories. He didn't like any of the kids TV shows (I didn't see anything wrong with that -until I realized it was because he couldn't comprehend and follow what was going on on TV) and he would still place in his mouth about anything that came across, just like a baby would do when trying to explore. When other kids were around, he wasn't able to join them in their play, rather he would just step back and watch them, or do his very own thing. Now that he was free to move on his own at the playground, instead of going up and down the slide with the other kids, he would just run, run, run... and wouldn't engage.

Patrick isn't a shy kid. He likes people and he is very charming at public places, always saying "bye" with a huge smile to anyone that walks by. So why he won't play with other kids? Why he won't even play with his toys? He would get frustrated VERY OFTEN when he couldn't do something, and the anger would be expressed by screaming, hitting and throwing things at others and me, a 7, 8, 9 months pregnant woman. It was very difficult to deal with this new situation and I just couldn't figure out why was Patrick acting like that.

I began to think about the mean kids from my childhood, that used to hit and bully other kids, that used to get bad grades at school, getting in trouble all the time, and that because of their attitude, other kids feared them, so they almost never had friends. I could picture Patrick becoming one of those mean kids. You somehow think that they are that way because their parents don't pay them attention, or because there are problems in their homes, or maybe, they are just so spoiled that they turn into real brats. But now we were raising one, and I couldn't understand what we were doing wrong.

Just few months before, I was concerned about Patrick being bullied at school because of his developmental delays and his Oculomotor Apraxia, and now it seemed like Patrick would actually turn out to be the bully, which, of course, isn't a better scenario. Where all this violent spirit came from? There is no violence at our home, so where does he learn these things? Are time-outs really not enough for some children? But how can I spank him to show him that hitting is wrong? How can I punish him by not watching TV or playing with X toy, when he doesn't like nor care about TV and has no favorite toy? Giving him the talk of why he should behave well was like giving the talk to a 5 month old. 

I was running out of ideas and patience, but luckily we were already working with the Infant and Toddler Connection, and his therapists had experience working with children like Patrick. They gave me great ideas, we figured out other ones, and all will be talked about in my next post.  

January-April Recap

When I wrote the recap for May and June, I realized I hadn't written one since the beginning of the year. So here it is:

March:

Ha! I don't even remember what happened on January and February, other than being sleep deprived thanks to the newborn/toddler combo.

So, March:
The first week of March, we drove to Northwest Indiana to visit Tim's parents, and then drove to St. Louis to visit Tim's sister and the extended family. Patrick has a memorable picture with Tim, his dad, and his grandfather, making it a 4 generations of Williamson men. Now that Robbie has joined the family, we had to get the 4-generations picture again.

4 generations!

Patrick being silly with Great Grandpa Williamson

We took our dog Lobo on the road trip with us, and he was surprisingly very well behaved. It was also the first snow experience for Robbie, here is a video.

The kids with daddy and Nana

Patrick enjoyed eating the delicious desserts that grandma "nana" baked for us. We all put a few pounds on.

Tim was a best man at a friend's wedding, who also happened to be the best man at our wedding. The wedding was in Indianapolis and we had a really good time. The kids stayed at the hotel with the grandparents and their aunt.

The bride and groom

Tim giving the toast -the speech was great!

Tim with our friend Aric and the groom.

 April:

I grew up in a small town called Lagunas, in the state of Oaxaca in Mexico. Lagunas is one of those cities that are built after a company settles there. The cement factory Cruz Azul settled there in the 1940s, and since then began to build a city for its employees. Houses, schools, churches, stores, recreational areas... about 95% of what Lagunas is today, was built by Cruz Azul. My family works for the cement company (as does about everyone who lives there) so I was born and raised there. Cruz Azul has a soccer team. Soccer is big in Mexico, and Cruz Azul happens to be one of the big teams there, often making it to the finals. I mention all this because I used to play soccer (middle school through university) and I miss it so much I can't wait for my kids to be old enough to play with me. In the meantime, we are content to just watch the matches every now and then. Cruz Azul was in a couple of tournaments this year, winning one in April, which was the perfect excuse for everyone in the house to wear their jerseys!

Team Cruz Azul!

Other than that, we were pretty much at home busy with the 2 kiddos, and every now and then with 3, as I have been babysitting a friend's baby. He (yes, another boy!) is just 3 weeks younger than Robbie, which is perfect because they play together, and Patrick loves having him around, too. We get to see him once or twice a month, so at least every month we get our baby Sam dose.

Planning a strike?

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If you are here for the developmental delays info and such, stay tuned for my next post, this is my last family-related story in a little while.