We chose public school this year... but not for next year.

Hello world!

We are still alive, and planning to continue with the blog. I basically took a year off because there were some changes in our family. First, we added a new member! We have a new baby boy who is as cute as he can be. During the pregnancy, my husband got promoted (yay!) but it came with a relocation to another state. In the end we were able to stay in Virginia, but while we thought we were moving, we kept busy trying to downsize, looking for new schools, house... and all what a family relocation entails.

As you may recall, I previously talked about our options for Patrick's school. We were torn between private school, public school, and homeschooling. He didn't pass the test at the private school, so that option was out of the question almost immediately. I kept exploring and evaluating the remaining two options, but when we found out we were moving while being pregnant, we decided to just enroll Patrick in public kindergarten, so that I would have time to deal with everything that was going on at home.

Patrick has a great teacher and really enjoys going to school. There is the occasional morning in which he doesn't want to go to school and cries, but he is perfectly fine and content by the time he arrives at school. He has made new friends and the great thing is that two of them are basically our neighbors, so he gets to play with them sometimes outside of school.

We also took a break from his private speech and occupational therapies. He receives speech and OT at school, although only a fraction of the time of what he used to get privately. The bigger plus from the public school, is that Patrick has an special aid. There are other 4 kids with an IEP in his class, who also receive help from the special aid. She is most of the time in the classroom and takes turns helping out the kids like Patrick.

Now, if you read the post about the school choices, you may remember our idea is to have Patrick repeat kindergarten. So he did his first year of Kindergarten in the public system, and now, for his repeat year, we were hoping he would do it in the private Catholic school by our home. Enrollment time is almost here, so I tried to have him do the school test at home, and sadly, I realized he isn't anywhere ready. It's actually quite the wake up call to realize he didn't improve much during this year at public kindergarten, so, we have decided to finally give a chance to homeschool.

My idea is, among other things, to outsource some of his education, include a special ed a few hours a week at home, restart private therapies, enroll him in sports to target his motor delays... basically, the idea is to give him a completely tailored education. He is a special kid who deserves a special education. I'm glad I have a few months before we start, so that I can gather all the resources and make a plan. I will be happy to share it with you once I have it. The special education program in the public system has failed my Patrick (and many other kids) in different ways. I'm glad we gave it a try, but sad to realize it didn't work. We don't want him to only be able to be in school with other regular kids, we want him to actually LEARN. I may talk in detail about our issues with the special ed system in public school later on, but for now, we are excited to finally help Patrick reach his full potential.

More later!

Homeschool, private school, or public school? That is the question.

Patrick began receiving public services since he was a little over one year old. He received speech, occupational and physical therapy. Once he turned 3, due to his developmental delays he qualified automatically to be enrolled in the public preschool, and since then he has his very own IEP (Individualized Education Program) to learn more about his preschool setting, click here. 

Patrick is 5 now, and it's time to consider kindergarten. These are our options:

Public School:

Pros: 

• Patrick's IEP states that he qualifies for services from the county. If he continues in the public system, everything that he qualifies for, will be given to him, at no additional cost. That means, speech therapy, occupational therapy, accommodations, and probably a one-on-one aide for a few hours a month to ensure he isn't lagging behind. 
• There are good chances that Patrick won't be the only one with developmental delays in his class, so he won't feel like he is the only one behind. Also, teachers should be more familiar as to how to work with these children since they may have more experience. 
• Our taxes are already paying for public school, so no additional cost. The money saved could be used towards private therapies, and to sign him up for a few activities like sports, music or arts and crafts.
• Many people seem to think that this is the best option for him based on his special needs.

Cons: 

• Too many students. Patrick has been doing well in a setting of 7 children per class. Public system could mean 30 students or more. 
• It's the public system. I have heard so many bad things about standardized tests, young children not being able to play enough or have recess, teaching them things that often parents not even agree on, and the list goes on. 
• More prone to bullying. I'm afraid his self-confidence can be compromised, when other kids his age start picking on him because he can't do what others can, because his speech is not clear and so on. 

CONCLUSION: Patrick has his big IEP meeting in 3 weeks. All my questions shall be answered. After this meeting I should have a better idea about what the public system believes my son needs, and what they could offer in the public system, private school or if I homeschool. 

Private School.

Pros: 

• Slightly less children than in the public system. 
• It's Christian based, so he will not only receive your regular school education, but will be also based in the same Christian principles in which we are raising our children. 
• I have several friends whose children attend this school, and they all say great things about it. 
• My husband really wants him to go to this school. 

Cons:

• It's the most expensive option of the three. 
• It's likely that only a few of the services in his IEP will be provided at this school. The school may not be able to provide him with all the accommodations he may need.
• There is an assessment in order to be accepted. Chances are, he will not pass! They gave me a list of all the things he should know (ABCs, counting, colors, shapes, drawing, answer info about him...) and he hardly knows anything!

CONCLUSION: Patrick's assessment is next week. If he doesn't pass, well, they are making the decision for me, leaving me to choose between the other two options. If he passes, however, I would be back to where I'm. This week I'm meeting with a mom who has a child at this school (3 grades up) with Joubert Syndrome, this should give me a better perspective of what this school can offer for my son.

Homeschool 

Pros:

• It would give him some time to catch up. Patrick seems to improve faster the more he learns to talk. So perhaps, if he has a year off from mainstream school, and we focus on his speech and some extracurricular activities to target his developmental delays, he could be really ready to go mainstream for elementary school.
• It would give us freedom to choose a variety of activities he enjoys, like swimming, music, cooking, gardening, construction... and we wouldn't be necessarily overwhelming him. Regular kindergarten hours are from 8am to 2:30pm Monday to Friday. All these activities I could sign him up for, however, wouldn't take nearly as much of his time, so he would still be able to take a break and enjoy his childhood playing!
• I would be in charge of what he learns. I would be able to customize his education, the schedule, etc.
• Homeschooling is growing fast where we live, with more and more options available. I have many friends who homeschool who can share their tips with me. There are many co-ops, excursion groups, playdates and many other activities for homeschoolers.

Cons:

• I'm not sure I could pull it off. I can get disorganized, I may procrastinate, I may have other gazillion things to do and I'm afraid I won't be able to consistently keep up with the homeschooling curriculum and schedule I set when we start.
• I hear all the time that Patrick does very well in the school setting. When I'm around, or when I'm the one teaching him, he gets very distracted, doesn't try hard enough. Seeing other kids performing certain tasks at school, make him feel like he has to do them as well. At home however, he won't follow instructions or practice enough.
• I also have a 3 year old! Many of the extracurricular activities for homeschoolers require parent participation, and having also a 3 year old with me would limit my options.

CONCLUSION: I need to put together what the schedule would look like for my son. I need to find the homeschooling resources in my area. For instance, I found something called Classical Conversations, and Skye Chase Co-op, both near me, both Christian, and both sound fantastic. These are once-a-week meetings each, so I need to find additional resources. I must come up with ideas on what to do with Robbie while I'm attending these classes with Patrick. Having a schedule set, a price set and all my options set, I will have a better idea if this is the way to go.

***

This is where I'm right now. I will update in a couple months once we have made our decision. One thing I know for sure, is that either option we choose, it may end up being only for one year. Then re-evaluate, and see if he needs to move to a different setting.

Practice makes perfect!

Patrick is riding a bike!!!!

Ok, it's a toddler bike, with training wheels... but, but, this is such a HUGE milestone! He had a small bike at home, and he just was never able to step on the pedals and ride. Instead, he would place his feet on the floor and sort of walk while sitting on the bike. I know many kids with Oculomotor Apraxia find riding a bike very challenging. We tried so many times to the point that I was sure he would be at least 7 years old before he was able to ride a bike.

Glad he proved me wrong!

The grandparents gave Patrick and Robbie a bike to each as birthday gifts (he turned 5). We visited them over Christmas and New Years, and while the kids were excited with their bikes, as soon as Patrick got on his bike, he began to "walk" with the bike. His dad, his grandpa, his grandma and myself tried teaching him how to use his feet to pedal but it was like he didn't have the coordination nor the strength to do it.

It was cold outside so everyday we went down to the basement to spend a few minutes practicing. I figured if we practiced 5 minutes every day he would get there sooner rather than later. It only took 4 days for him to do it! Then the weather warmed up enough for him to try his recently acquired skills in the backyard, and he was thrilled! I'm so proud of my little guy. When vacation was over and we came back home, we had a couple of not-so-cold days and he rode his bike around the block while we walked the dog. He is so proud of himself and enjoys doing it.

Can't wait for spring so he can ride it more, and maybe he can teach his little brother how to do it!

Practice, practice, practice. That's all it takes.

Happy New Year!

Are therapies really important?

Summer is almost over. My husband has been traveling for work for most of the time, so I feel like I haven't been able to do all the summer things I wanted to do with the kids. One of those things was to take them to the $1 movies Regal Cinema offers over the summer. We went only once, granted, it conflicted with Patrick's therapies on Tuesdays, and with mom's group on Wednesdays. Regardless, I felt like I could have made some accommodations to make it work, if only I hadn't been occupied with other things the past couple months. This week was the last week of the Summer movies, so I called to reschedule Patrick's therapy to the afternoon so we could spend the morning at the theater and enjoying a nice lunch afterwards. I introduced the $1 summer movies to a new friend I made recently, who joined us with her daughter, and now they can't wait for next summer to take advantage of the great deal.

After a busy morning, we headed to therapy. We have ran out of the number of therapies allowed by the insurance. We reached the maximum not even half way through the year. We had to reduce Patrick's Occupational and Speech therapies from twice a week to once a week because it would be too much money without the insurance coverage. I got so frustrated, hopeless and helpless days ago after talking to the insurance about the possibility of increasing the limit of therapies allowed. Of course their response was "not possible." My new friend had just asked me this morning if self-pay therapies were expensive, and when I told her how much we were now paying her response made me doubt if it was all worth it. She couldn't believe we were paying that much for only 90 minutes of service a week (1-60 minutes session of OT, 1-30 minutes session of SP).

I began to question it myself. Does he really need the therapies? Can I just get some tips online and from books and teach him myself? What if the improvement I've seen is due only to the fact that he is growing, and not that he is receiving therapies? Will he catch up on his own as he continues to grow?Are we just wasting all these money and our time? Will he regress if we stop the therapies? What should we do? Then we went to therapy, and God found a way to answer my pleas.

Because we rescheduled, Patrick got to see different speech and occupational therapists than the ones he usually sees. It's great to see he doesn't fight going into the sessions anymore, not even with these nice yet unfamiliar young ladies. When it was his turn for OT, the therapist came to take him, and I realized it was the same woman who performed his evaluation 9 months ago. I got back memories of that meeting: He didn't cooperate much. He cried and screamed at some point. He was either hiding behind me or all over the place. He couldn't perform most of the tasks requested. She had to cut the evaluation short because of his lack of cooperation, but she had seen enough. It was obvious that Patrick lagged behind on many areas.

I knew he was better overall now compared to 9 months ago. But I didn't realize how much better until today's session was over and she came to talk to me. Her face could speak for herself. She was in total awe. She said emphatically how much improvement she saw on Patrick. She talked about all the things they did and how surprised she was at the things he could do. He has improved by leaps and bounds... He still got that great aim when throwing things... He is keeping his hands open most of the time... He was able to balance his body very well on the therapy ball... He has gotten so much strength in his muscles... He was very focus in all the activities... He worked so hard... 

I had to stop listening and had to think about something else. I distracted myself with the kids around, because I didn't want to cry. It was hard not to. I had that expression when someone is about to cry, I could feel it, and I didn't want to show it. But I know she noticed, and I know it was not the first time she had seen this expression in a parent. After all, we are all there hoping for our kids to get better, and when we hear they do, we rejoice. Therapists must feel good, too, after all, they are the ones helping make these improvements possible.

I was reminded today of how far my son has come, how fast, and how much better he is because of his therapies. There are times when all I see is that gap between him and children his age, that I forget how much far behind he was before, and how much bigger that gap used to be. I had forgotten about the evaluation from 9 months ago, but I'm glad I was coincidentally reminded today about it, when I saw the therapist who performed it. I don't know how much longer will Patrick be receiving therapies. Next year, when our insurance starts covering again his therapies, I don't think we will request to go back to receiving services twice a week. I don't want to overwhelm him. He is just a child, not quite 5 years old yet. But I know we will continue to receive therapies for as long as he needs them and for as long as he enjoys them, and for as long as they continue to help him as they have all this time.

Busy with extracurricular activities (Part 2)

I talked on my last post about the swimming lessons and other classes that Patrick has been taking "mainstream". But there are 2 additional classes that he is taking over the summer that are designated for children with special needs.

Soccer:

Patrick has been attending soccer classes through a local program called C.A.T.S (Children's Adaptive Team Sports). They had a board bulletin about this at the place where Patrick receives private therapy. I called and they had already had the first class, but I signed him up regardless. I'm from Mexico and grew up playing and being a fan of soccer, so I can't wait to be a soccer mom. Due to Patrick's developmental delays and motor planning issues, I know he couldn't join other children his age on a regular class, so I was thrilled to find out about this special program, so close to my house!

The class is advertised for kids 4-10 years old. I wasn't sure how that would work exactly with such a wide age range, however, the skill level of all the kids is about the same. There are a couple older children with walkers, a couple other with Autism, and a couple other who, like Patrick, you couldn't pinpoint what exactly the health issue is, but you know there is a developmental delay. This class is perfect for him to help him build confidence and learn what is like to be in a sport team.

The instructors on this program are volunteers. Once I read a quote that said "Volunteers don't have extra time, they have extra love to give" and it's so true! We can't go around assuming that volunteers simply have extra time in their hands and this is why they do what they do. They do it because they want to do it, and they find the time to fit it in their busy schedules. I hope other parents elsewhere who are reading this start their own version of C.A.T.S. in their cities if something like this isn't available. It's a great opportunity for children with special needs that otherwise wouldn't have access to experience what it is to belong in a team and train and play regularly.

Music:

A good friend of mine talked to me about a great piano teacher her kids have, and said he mentioned once that he used to do music therapy for autistic children. She introduced us and he was so nice that we decided to give it a try. Patrick is not autistic, but sometimes he presents some behavior that can be considered on the spectrum. His sensory issues, his motor planning issues, his developmental delays - all can be helped with music classes. The instructor suggested to start with sticks and other instruments before getting him to practice piano, as he is still really young.

Patrick enjoys making music with the instruments. It's not easy to get him to follow a pattern but that's the point of taking music lessons. After the first class, the instructor gave me a few exercises to practice at home. I like this type of "homework" because it's so much fun and a great way to spend some quality time with my children. One of the observations the instructor made was to motivate Patrick to make more eye contact or at least make him "aware" of his surroundings. Since then I started to pay more attention to this and realized that indeed when he is playing an instrument he is into it so much he stops paying attention to anything else, and this is the reason why he won't even attempt to follow our patterns/rhythms.

When Patrick was 2, we used to attend a great group class called Music Together Vivo, which is offered in various cities across the United States. It's for children 0-5, and parent participation is encouraged. It was a great way to socialize and dance, sing and play instruments following a pattern. We were considering signing him up again because he really liked those, but when we got the opportunity to get one-on-one music therapy, we decided to give this a try and we are very pleased.

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.

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.

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.

To the new parents of kids with special needs

A couple of months ago, I took Patrick and Robbie to the softroom at the Lee RECenter. The place was empty and the kids were happy to have the whole room to themselves. Shortly after we arrived, a mother came with her son, accompanied by who I think was the grandmother. The little boy must have been around 1 year old, judging by his height. He was very skinny, however, making him look significantly younger, and looking also quite fragile. Mom and grandma were trying to help him stand with support. The softroom is such a great place for little ones with low muscle tone. I know it was great for Patrick. They were also keeping him on his belly as if trying to make him crawl. I remembered those days. The boy was wearing prescription glasses. I'm always curious about little kids that wear glasses, because Patrick has an eye disorder, so I feel like asking all sorts of questions, but I never ask.

It was obvious that the baby boy had some sort of health condition causing his fragile appearance, his low muscle tone, and the eye problem. When I see mothers of kids with disabilities, I feel like saying hi. I feel like telling them that I have one of my own. I want to exchange tips on how to help our little ones. But granted, I never say hi. I just don't know how they will react. This time, I thought, I should give it a try. There was nobody else in the softroom but us, and they seemed like nice ladies. I was getting ready to start a conversation, when the baby, who was on his belly, started to throw up. The mother was all nervous, probably worried that I would mind that the boy just threw up on an area where my kids were playing without shoes. The grandmother immediately rushed to help her and hold the baby while the mother quickly cleaned up. And then I saw it. That face that just someone who has been through it, is able to read: I saw her trying to keep it together, when all she wanted to do was to cry. They left immediately after. They had spent a total of five, maybe ten minutes in there, but once that happened, she just couldn't be there anymore.

I was her once.

It often happened when I was new to this whole thing of having a child that is less than perfect healthy wise. Seeing kids that were Patrick's age running around in the playground while he was sitting there not being able to move would just break my heart. All sorts of things would go through my mind and heart at that point: Will he ever walk? Will he be a sad boy when he becomes aware of his disabilities? Feeling ready to burst in tears, I would just pick up Patrick and leave the place.

I'm glad I'm over that phase. It's very good for me to stay around kids his age that are able to do 10 thousand more things than Patrick is able to do, and it's even better for Patrick to be around them, so that little by little he learns to affront his obstacles. He learns significantly faster by observing and imitating other kids than from me or the therapists teaching him. But the fact that now we are happy to "stay" socializing with healthy kids, trying to do the things they are doing, doesn't mean there aren't times when I feel sad when he can't do something. It's less often, but it happens. Actually, it happened very recently:

We went for the first time to the KidzNMotion in Woodbridge, VA. There are all sort of bounce houses, giant slides and some other things for kids of all ages to play with. There was one gigantic slide where Patrick saw both older and younger kids having fun, so he wanted to try it. In order to go down the slide, first you had to go up on narrow inflatable stairs, and as you can imagine, it wasn't as easy as he had thought. I figured it would require more time for him than it takes other kids to go up, so I waited until it wasn't crowded to have him on there. I decided I would take a video of him going up, to share it on this blog when talking about what are the fun things kids can do that would help improve their coordination, balance and low tone issues. Oh boy I never thought I would actually share this video on a post talking, instead, about feeling ridiculously helpless at my son's challenges. The first video shows Patrick the very first time he tried.

He kept trying a few more times, before understanding the way he had to coordinate his legs and arms in order to be able to climb. When I saw that he had made quite the progress, and that he had the intention of going all the way up, I decided to take a video again, knowing it would be the video to share about the work out kids with low muscle tone get on these things, and how much fun it is because after the work out, they get to go down the slide. Not once I thought that Patrick wouldn't make it that far.

There are so many things you can see on that video. First, Patrick gets intimidated by another child who wants to go up. He is aware that he is too slow and by her being behind him, he feels pressured. So he decides to give up even before trying. Next, you see him watching the girl going down the slide, and remembering that that's the goal, he decides to try again. For a little while, he does pretty well going up, all things considered. Then, there is that point where he gets stuck. He is so close, so close to the end, but he just doesn't have the physical strength and ability to finish the job. He was about to cry, and kept turning his head at me like trying to get some help. Lastly, he gives up, and comes back down, letting me know it was too "big", and trying to forget about the incident, he moves on to other things.

One thing you don't see in the video: Me, trying to keep myself together to not burst in tears. I couldn't even utter a single word to encourage him to keep going. Seeing him trying so hard, so hard to hang in there and finish that last couple of steps, and then realizing that that's just not going to happen, made me so angry with life, and so sad. Actually, I think I shred a few tears, that were quickly wiped off because I didn't want to feel embarrassed of other people seeing me, including Patrick. There are things that Robbie can't do, and doesn't make me sad at all... But with Patrick is different. I know he has a rare health condition, so when things like this happen, I'm reminded of that. These challenges remind me that often times, Patrick won't be physically able to do something right away because of the way he was born, and this makes me sad. How couldn't it? He is my sweet son.

Just like the mom at the softroom, I could have just left the place. But I have done that enough. It's been a couple of years now of dealing with this, that leaving is not an option anymore. So I took off my shoes and decided to help him myself. We found a smaller slide, and I figured we should start there. Then a bigger one. Then we found one that was almost as big as the one that he couldn't go on, and although he was hesitant at first to give it a try, I encouraged him and let him know we had all the time in the world to try. Kids like Patrick need extra time to learn and do things. Then I let him do it all by himself, and he did it. He was so full with joy I felt like crying again. Happy tears this time, of course. He had a blast on that slide and he was happy that mommy and little brother were having fun there, too. Maybe next time we go there, we will give the big slide another try. Maybe he still won't be able to climb it, but that's OK, we know there are plenty other ones that he CAN do, and we know, too, that with enough practice, one day he will be able to climb that slide. He will overcome the obstacles. I know that now.

As the time goes by, you will learn from your mistakes. Eventually, you will get thicker skin and discover that you can actually endure whatever comes your way. You will meet other parents going through the same path you are. Seeing those parents hanging in there is comforting and encouraging. And when our kids finally accomplish something, as little as it may seem to others, the joy you will feel won't simply compare. Sometimes our special kids need more time and patience, than our help. Sometimes they need more trust from us. If they know we believe in them, they will believe in themselves. My Patrick is the happiest when he helps me carry the groceries from the car. He struggles a little trying to not lose balance while holding the small bag of food, but he is happy to help me, because, you see, his biggest need is to know that he is needed. That I need him. All we want is for our kids to be happy, right? Well, nothing will give them more joy in the world than the many ways you can show your love for them.

If you are a new parent of a child with developmental delays, and to the mother who left the softroom feeling helpless and sad, all I want to say is, it gets better. I promise you.

Building friendship: A challenge for children with OMA?

I wrote on my last post about our concerns regarding Patrick's social skills, stating that he seems to be overcoming his issues slowly but surely. Today, Patrick doesn't mind being around children, and by "doesn't mind" I mean exactly that: He won't play with them, but at least he is not bothered anymore that they are next to him. Until recently, I thought the lack of engagement was due to his developmental delays: 18 months ago, kids his age were running and climbing, when he couldn't even walk; today kids his age are singing and doing pretend play, when he can't even make a 3-word phrase. These seemed like legitimate, almost obvious reasons as to why Patrick won't engage kids, but now I'm not sure what to make of it. 

Recently, a mother of a teenager with OMA came across my blog. She wrote me an email that got me thinking. Among other things, she wrote me this: "...The most heart breaking is her social skill. From 3 years old till now (15) she has great difficulty forming friendship. Whenever she attended birthday parties, she never participated in games or activities. She's most comfortable with kids much younger or adults. My daughter is much loved & protected by her family, cousins, friends of ours, but she has great difficulty in building friendship." 

Patrick is social, but also he is not. I would say, he is very selective whom he is social with. The thing that got me thinking from that email, is the part where she says that her daughter is most comfortable with kids much younger or adults. This sounds like Patrick. Patrick's last IEP (the school Individualized Education Program) had an observation from his teacher stating: "Patrick will watch children who are playing nearby and he will play near them... Patrick mostly interacts with staff members." Do you see the different approach towards adults vs kids?

When my sister and nephew were visiting, she pointed out how funny it was that when we were out and about, Patrick loved to say hi and shake hands to elderly people. Now that I think about it, I have never seen him spontaneously shake hands, or even say hi to any child around his age (other than his brother). I observe Patrick at the playground, soft room, water park... and realize, he doesn't like playing with other kids. He isn't mean to them, he simply doesn't engage.

It takes a little while for Patrick to be comfortable to engage an adult, but once he is comfortable enough, he can be the most charming, playful and fun kid around. But then again, he won't get this way with children, no matter how much time he spends with them (he was with his peers 3 hours a day, five days a week, for 9 months!) The only lucky child to get Patrick's attention and play time is his 18 month old brother Robbie. This could confirm that it is all related to his developmental delay: Patrick is at or above his brother's developmental stage -Patrick can take the lead, and Robbie will follow him, whereas other kids are significantly advanced that are not taking considerations towards Patrick's developmental delays.

If this is true, then it means that as Patrick's grows, and matches the developmental skills of other kids, he should have no problem making friends. I could think of this as a phase, but the situation of the 15 year old teenager rises the question if there is something else going on there. She is not 3 years like Patrick anymore. 12 years later, that mother is still concerned about her daughter not being able to make friends. Mother to mother, she asks me for any advice, but sadly I have none, because up until her email, I didn't think Patrick could continue to not engage people his age as he grew older. 

During this past school year, Patrick went from not wanting to play around kids, to being OK playing around kids, and I had hoped that in the upcoming school year Patrick would simply move from being OK playing around kids, to actually playing with kids. While this scenario may happen, right now I have no answers on how to help her daughter, so I'm asking any readers out there that have older children who have gone through this, to please let us know how have you/are you dealing with a situation like this one. From a mother to another, I can tell you that any advice, a word of encouragement, or simply sharing a common story so that she knows she is not alone in this, will be greatly appreciated. If you are a teenager or an adult with OMA who has challenges making friends, I'm sure this sweet 15 year old girl will love to hear your story.

My evaluation of Patrick's preschool year

It's been an unusual long time since my last post. There hasn't been any particular reason, but there has been definitely many things I have been meaning to write, and I hope I get to each of them in the upcoming weeks (months?).

Today I'm going to talk about Patrick finishing his first year of preschool. On the last day my husband and I went to the school to thank the teachers for all their patience and dedication to our Patrick. The teacher said Patrick was a very pleasant boy the whole year, and that he improved quite a lot, specially on his speech. She mentioned she is putting a suggestion to move Patrick, and another 2 kids from his group to the afternoon program. She believes these three kids have improved the most and would benefit greatly from more challenging activities, which are offered to the afternoon class. It isn't guaranteed that the change will happen, but it looks like a good possibility!

Patrick can count (sometimes) up to 10, however, he often likes to go by pairs. When he is getting ready to go down the slide, for example, instead of counting 1, 2, 3 and go, he says: 2, 4, 6 and go! We don't know why he does this, but I actually find it funny. He doesn't know his ABCs, and can't sing any song, but he is happy to do the body movements each songs invites (Head and Shoulders, Wheels on the Bus, Itsy Bitsy Spider). He is able to sort by colors, but he is able to name only 1 or 2 colors. He only differentiates circles from lines, not any other shape. He may be able to identify one or two letters, and this is just sometimes. His drawing is still very similar to that of his 18 month old brother. Based on this skills, I could say that Patrick wasted all his year at preschool, because, really, he didn't learn much, and also, he has learned these same things from me at home.

But I didn't send Patrick to special preschool to learn the alphabet, so to be honest, I'm not too concerned about all that. Right now, when it comes to Patrick's skills, my two biggest concerns are his language and social skills, and these were the main reasons why he attended preschool. When he started school, Patrick was just beginning to put two words together, it was very rare that you would hear "mommy come", or "baby eat." And if having a limited vocabulary wasn't enough, his pronunciation was very poor, too, making it difficult for anyone to understand. Today, his pronunciation of most words are close to how they are supposed to sound. He has mastered putting two words together, and he's slowly beginning to use three words, like "Mommy come here". Now I have a very talkative toddler, and I attribute that to the school. Every single day they sang at school, did pretend play with friends, learned new vocabulary -different from what he would have been exposed at home, and all of this was directed by special education teachers who knew, better than me, how to help him achieve all that.

In regard to his social skills, a year ago Patrick wouldn't play if there were other kids close to him. He would step back and observe all the time. If we were at the playground or the soft room, he would prefer to watch them play, wait for them to be gone (or at least not too close), and then he would imitate what the other kids were doing. Today, Patrick doesn't mind the other kids. He is able to play his own games while kids are next to him, and that's an improvement that I attribute to him being able to play, eat, sing, work... every single day with other kids at school. There is, of course, much room for improvement, for instance, it would be great if Patrick actually played with the kids, rather than just not mind that there are children around him, but I will talk about this on my next post. In the meantime, let me end this post with a few pictures of Patrick's school days.

Waiting for the bus

Patrick running to us after his last day of school

Patrick and his teacher!

We like to hang Patrick's arts and crafts. He likes to point and say "Packi did!"

We took a pirate boat tour on the Potomac to celebrate his last day of school

Pirates stealing the treasure! We better get them!

Patrick misses riding the bus, and says he misses his teacher and friends as well. Fortunately, this long school break happens during the summer (when the weather is nice and we can do all sorts of outdoor activities) so I hope he has been having as much fun with us as he seems to have when he is in school!

Overcoming YOUR tiny obstacles

It makes me so happy to receive emails and read some comments from some mothers who come across this blog looking for some answers after hearing the words Ocular Motor Apraxia. I find it very interesting and informative to read your stories, but, this blog was meant to inform other parents, so I feel that keeping those stories to myself isn't fair. This is why I'm launching the series: Overcoming Your Tiny Obstacles.

I would like to ask you, yes, you, the mother or father of a child with OMA and/or severe developmental delays, and I also want to ask you, the teenager or adult who has/had any of these conditions, to share your story with us. I would like you to use this platform to share your story.

To do so, I came up with a format, to have some sort of continuity and to make sure we get the most basic information from everyone. I will ask you to please follow the format described below as much as possible, and to send it to me.

1. Introduction - 1 paragraph. Begin by mentioning whether you are a mother of, grandparent of... or your are the one with OMA/developmental delays. Include your child's/your name, or, if you prefer to remain anonymous, you can use a nickname. I do ask, however, that you include the country and state/region you live in. Tell us what's the medical diagnosis.
2. Background. 1-2 paragraphs. Tell us how and when (age) did you find out about it. Tell us what type of testings you got done, and the findings in regard to the causes, if you know them. Let us know if any of your health issues also run in a sibling or any other member of your family.
3. Issues. 2-4 paragraphs. Tell us all the issues related to the diagnosis. Does your child have speech delay? Hypotonia? How these issues affect your child's development in the house, at school... in his daily life?
4. Eradication. 2-4 paragraphs. Tell us what are you doing to ease the symptoms. Do you take/took therapies? Have had any surgery? What specialists have you visited? Vitamins/supplements? What has worked for you and what hasn't? Has any of symptoms disappear or has become less severe on its own as your child grows?
5. Conclusion. 1-2 paragraphs. Anything else you want to add.

I hope you take a moment to share your story. Use this forum to let us know how you are helping your child, or to tell us how you are doing after having any of these medical conditions. Ocular Motor Apraxia is a rare disorder, so we need to use tools like this to connect with others in our same situation, and to inform those who are looking for answers to something that the medical community knows so little about.

We can't wait to hear from you.

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.

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!