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.