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.

Busy with extracurricular activities (Part I)

Cooking!

Patrick struggles in new environments, specially if these are enclosed with a bunch of unknown people. If on top of this, Patrick is expected to perform in a specific way, like following instructions to color or sing, well, forget it, we will have a guaranteed meltdown or at the very least a hyperactive child whose body can't get enough input.

We have discovered that it's not because he doesn't want to be there, but something is triggered in his brain and then in his body that cause such reaction during these situations. He doesn't know how to conduct himself so he gets a little rough. By now I know that it will just take to repeat these "new" situations a couple of times and he will be OK the third time. Instead of preventing my son from this experience, I have learned that exposing him more to this, will help him learn to manage these situations better.

We were thinking about enrolling him at a Summer camp, but he isn't fully potty trained yet (almost there, though!) and also they require that the child separates from parents easily, and as I mentioned above, it's likely that the first couple days would be a nightmare and he would probably be kicked out! So we decided to instead sign him up for a few different classes with parent participation and hopefully next year he can enjoy the summer camp experience.

Patrick took swimming classes at the beginning of Spring. He loves being in the water, and I think swimming is a great way to practice coordination. You can tell it's challenging for him to figure out how to coordinate his arms and legs to make the motion of swimming. But what's the point of taking classes if it isn't to learn? Right? Right! So he will get there, he just needs to practice more.

Swimming class

Due to his low tone in the mouth, Patrick kept his mouth open almost the whole time. The instructor and my husband kept telling him to close it, and he would try it but few seconds later he would go back to opening the mouth. I wrote a note to his school teacher saying P was taking swimming classes, and I made mention of how he kept opening the mouth. She wrote me back saying they made it the topic of the day, and they told the kids to remember to "zip" the mouth when they are in the pool or the tub. Patrick came home showing me how to zzziiiippp. Have I said how much I like his teacher?

When the swimming classes were over I wasn't sure what else to sign him up for from all what was available. So, we signed him up for a "variety zone" class at the near RECenter. It was 10 classes that included a taste of gym, cooking, gardening, arts and crafts, among other things.

First 2 classes were an absolute nightmare, but I knew that could be the case so I stood strong and patient! This time, I was prepared for the crazy behavior, and I just prayed that the instructor, the other kids and the other parents wouldn't be annoyed by him. Aside from one mom who gave me nasty looks at the beginning, all of them were very nice about it. He attended 45-minute classes once a week. Gardening and cooking were his absolute favorite classes and I'm planning to sign him up for just the cooking class this fall, and gardening class next spring. 

Cooking class

For the summer, Patrick will be taking 2 classes geared towards children with special needs, and I will talk more about it on my next post.

"This is Amazing!"

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

So we went to Six Flags.

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

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

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

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

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

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

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

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

You made it so.

The process of learning -Robbie vs Patrick

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

It's very different.

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

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

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

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

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

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

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

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

Those moms who are not my child's mom.

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

They are mothers, too.

But not the mothers of my son.

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

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

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

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

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

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

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

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

Thank you for this and all you do.

Happy mothers day.

Things I have learned from raising a son with OMA

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

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