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.

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.

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.

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.

Overcoming Low Muscle Tone: Parents

To close the series on Overcoming Low Muscle Tone, I wanted to write a post about the indispensable role that the primary caregivers of the child play.

I'm not an expert on Low Muscle Tone. I'm not even a therapist, or a special teacher and actually I had never heard of Low Muscle Tone until the day I read the term online, when I was looking for answers to why Patrick wasn't crawling, rolling or pulling up. Being just shy of 4,000 hits on this blog, it makes me so happy to see that most of those hits are from Google searches on low muscle tone, hypotonia blog, oculomotor apraxia, afos for kids and so forth. This means, parents out there are looking for answers to their questions, and looking for ways to help their children, just like I'm. This is the very first step and most important one on helping your children. If the primary caregivers are determined to help the child overcome the obstacles, then he/she will overcome the obstacles.

I realize that in this series I missed out on mentioning so many toys that are specifically designed to help kids with low muscle tone. There are many exercises to do at home that I didn't list, and perhaps some specialists that are there to help hypotonic kids that I have never heard of. But the thing is, I'm writing our experience, I'm here to tell what we have done, and what has worked for us. Patrick's hypotonia wasn't severe, but it was still stopping him from developing at his friends' speed. Every single thing posted here, we did it, and that is why Patrick is now walking and running and jumping. So, you see, it's not about the doctor, or the therapist, or the toy, or the exercise, it is about all the things combined, that you, as parents, will do for your child.

My mother would say that ultimately Patrick's improvements are possible because of all the prayers. And she is probably right. Rather than praying for a miracle that one day Patrick will just wake up and will be capable of doing all the things kids his age do, we actually pray that God gives me and my husband the wisdom to know how to better help Patrick. We pray that we have easy access to the tools (doctors, recreational areas) that will help us help him. We pray for our patience, and our perseverance, and to never let our hope die, that one day, not long from now, Patrick will be able to close that gap of capabilities between him and kids his age.

As much as the Pediatrician loves children, or the special ed loves children, or the therapist loves children, no one loves your children more than you do. So nobody has the desire and love to help your child more than you do. One hour a week of physical therapy won't make the difference. Hypotonia is not a rare disorder, there is a lot of information out there, on websites, books, online groups... you don't need to spend too much time trying to figure out how to help your child. It's all at your fingertips. Reach out to services provided by your county, ask your doctor. Take your child to the playground and other outdoor activities. Host play dates, go to play dates. Make your partner involved. 

But, don't feel bad if you don't work with your child every single day. We have other things to do besides working with our hypotonic child. We have other children too, and a house to take care of, meals to make, and perhaps a job. And we get tired, too. So we need to rest. And we need to go out and have adult conversations with adults outside our jobs. And trust me, taking care of all that helps the hypotonic child as well. Because if you, the primary caregiver are fulfilling your needs and desires, your overall attitude is so positive, energetic and stress-free that therefore your are more able to fulfill your child's needs. Trust me, I know.

Take a break but don't lose sight of goal. That's what I'm trying to say here. Work with your child short, but often periods of time a week. Your consistency will make the difference, you will make the difference. Be your child's best advocate. 

Overcoming Low Muscle Tone: Professional Help - Therapists

On my previous post, Overcoming Low Muscle Tone: Professional Help - Doctors, I wrote that Patrick's neurologist suggested that he started Early Intervention services to help with his developmental delays.

Of all the things that we have done to help Patrick overcome his low muscle tone (and his developmental delays in general), Early Intervention Services have been the most helpful resource. It's probable that your hypotonic child is already receiving Early Intervention, but in case you are new to this, here is a brief explanation (from their website) of what they do:

The Infant & Toddler Connection of Virginia provides early intervention supports and services to infants and toddlers from birth through age two who are not developing as expected or who have a medical condition that can delay normal development. 

A child with a developmental delay or differences in development is not developing like other children his age. The delay or difference can be in one or more of the following areas:

- Thinking, learning, and playing

- Moving, seeing, and hearing

- Understanding and using sounds, gestures and words
- Taking care of one's self, including eating and dressing
- Developing relationships 

Supports and services focus on helping parents and other caregivers know how to find ways to help the child learn during everyday activities. These supports and services are available for all eligible children and their families regardless of the family's ability to pay. 

Every state provides this service, and if your child needs assistance, you shouldn't have any problem getting it. An initial interview/observation is scheduled which will help them determine if your child is eligible. Also, they will do an informal visit to your house to ensure that your child is provided with a safe environment. Afterwards, you will have a meeting to decide what type of services your child will receive and with what frequency. You are also assigned a coordinator who will oversee the work of the therapists and respond to your concerns.

Once you are all set, the therapist(s) will go to your house for 1 hour, observe your child while playing, and will give you suggestions on what to do to help improve his developmental delays. You are supposed to work on these tasks on a daily basis. Every 6 months you, your coordinator and the therapists will have a meeting to evaluate the progress, create new goals, and determine if a change on the frequency of therapies is needed, and if any additional therapists should join the team.

Below, Patrick's experience with the Infant and Toddler Connection of Virginia:

a) Physical Therapist: Patrick began taking twice a month therapies. Most of the suggestions I have written on this blog are actually ideas that his therapist has given me all along. Patrick is doing so great on his walking and running that therapies have been reduced to only one a month. Also, suggestions from her therapist now focus more on his fine motor skills.

b) Speech Therapist: As I mentioned in the last post, the developmental pediatrician at Children's Hospital suggested that Patrick took speech therapist. The coordinator agreed and Patrick began taking therapies twice a month. Shortly after, Patrick had his 1 year evaluation with the coordinator, who suggested to increase therapies to 3 times a month. Given that she sees Patrick more often than his physical therapist, she has also been helping us with some of Patrick's behavior issues. We are now in the midst of finding out what type of problem is causing Patrick's speech delay, having verbal apraxia as a possibility.

c) Occupational Therapist: Patrick does not take occupational therapies, however, we met with one couple days ago. As I have mentioned briefly in previous posts, Patrick's throwing, screaming and hitting was starting to get out of control. Also, due to his constant mouthing (placing toys in his mouth) and banging of toys, his ability to play with toys, learn and engage with other kids is limited. His body (joints) need pressure/hard input, and so all of this made us believe that Patrick had Sensory Integration Disorder. After a written test I had to do, the occupational therapist scored it, and met with me (and the speech therapist) to give me the results. Patrick appears to have some level of sensory integration disorder in some areas, but the occupational therapist suggested we didn't address his issue as SID, but rather, we should focus in the particular areas that we need to work on and will give us some ideas on what to do to help him. As she said it "Sensory Integration Disorder are big words and you may get lost in it if you see it as a whole picture. Let's just work in the mere areas he needs help, and it will be less overwhelming for you and Patrick". I was very happy with her approach, and I'm looking forward to the report with detailed suggestions she will send me shortly.

All of the therapies that Patrick receives currently are provided by the Infant and Toddler Connection of Virginia, and are provided to us at no cost. Luckily, Patrick's delays aren't severe, so private therapies haven't been required. Patrick won't be able to receive these services after November, when he turns 3, but he will continue to receive tailored services at the Special Education Preschool. It's possible, however, that if Patrick's speech delay has little improvement after he starts preschool, we may add private therapies.

Overcoming Low Muscle Tone: Professional Help - Doctors

This post is part 5 on the series: Overcoming Low Muscle Tone. If you want to read part 4, Playing at home, please click here.

If you have an overall healthy child, the following may seem like a ridiculous long list of specialists to have to see, specially for someone who is only 2 years of age, but when I read stories of other moms that are going through a similar experience, I often seem to fall short on the list of doctors! By having hypotonia, you may think that only physical therapies are necessary, but there are a number of areas that get affected too, for example, nutrition.

I don't want to overwhelm Patrick with too many doctor visits, and this is the main reason why I have put on hold visiting some specialist in the hopes that he will overcome some of the problems as he grows, without needing to see the doctor. But I don't want to wait too long either, because when it comes to developmental delays, the sooner you take action, the greater the improvements in the child.

a) Medical Specialists

• Pediatrician: The pediatrician is for your child, what your primary family physician is for you. He is your "go to" doctor when your child is not feeling well. If you think that something just isn't right in your child, check with his Peditrician. With his expertise he will be able to give a general diagnosis, and if necessary, suggest to see a specialists, he will tell you which one is the most appropriate and give you referrals. Patrick's pediatrician was the one who referred us to the neurologist, and that was the right call.  (To read about how this particular experience went for us, please click here.)

• Neurologist: We originally saw the neurologist because of Patrick's eye issue, and he mentioned that hypotonia could be a consequence of it. The neurologist was the one who told what is what Patrick has and suggested to get him Early Intervention. (If you want to read about our visit to the neurologist and the diagnosis, please check out this post.) We had to perform a CT Scan to find out what the problem was. Perhaps your child has Down Sydrome, or Cerebral Palsy, or something else, so finding out the reason behind, will make it easier for you to treat the core issue, and possibly help better on his low muscle tone. Perhaps your child has none of that, but you still want to find out the cause and may choose to do genetic testing, CT Scans on your child or other tests.

• Neurodevelopmental Pediatrician: It's important that you have a medical specialist overseeing periodically the improvement (or lack thereof) on your child. Patrick's regular pediatrician doesn't treat any of Patrick's specific issues and even though the neurologist was important to get a diagnosis, he isn't doing any follow-ups. This is why we also see a neurodevelopmental pediatrician at Children's Hospital. They evaluate Patrick every 6 months, and are very knowledgeable of his conditions. At the first evaluation, they suggested we added speech therapies, when we were just applying the "wait and see", thinking he was just a late a talker and would start talking soon. Well, 8 months after that visit, Patrick is still doing approximations of single words. They knew this wasn't just a matter of a bit of a delay, but rather an issue that had to be addressed by a professional. Patrick eventually started taking speech therapist and I can only imagine how much further behind he would be if they didn't have suggested that. 

• Nutritionist: At the second visit with the neurodevelopmental pediatrician, the doctor suggested to see a nutritionist, due to Patrick's low weight. All along I have been trying to give him extra food and give him Pediasure because I know he could use more weight, but I didn't think it was necessary to see a nutritionist. He is too skinny, but so was my husband when he was Patrick's age. Plus, he is otherwise very healthy and very active. He was close to the 30 percentile on his last visit with his regular pediatrician, but what the developmental pediatrician noticed was that his percentile kept going down at every visit. Like I said, I don't want to keep adding more and more doctors to Patrick when they aren't necessary, so before calling the nutritionist, I decided to be more aggressive on his feeding schedule, portions and contents, and I added a general vitamin on top of the vitamin D he was already taking. After 6 weeks, we didn't get positive results. The dev ped was right, he needed professional help. I called last week to make an appointment with a nutritionist at Children's Hospital, but of course the soonest they can do is the end of July. Last week I also read that most kids with low muscle tone and developmental delays have nutrition issues, including low weight and constipation, which Patrick has. The article, which you can read here, explains how important is to address their nutrition in order to get positive results in their development. So now I'm banging my head on the wall for not acting sooner. I will make sure to write a post after the visit to the nutritionist takes place.

b) Therapists

• Physical Therapist
• Speech Therapist
• Occupational Therapist

This is already a long post, so I will talk about each therapist in the next post, likely in the next few days.

Please note that Patrick has also seen a pediatric neuro ophtalmologist to check on his Oculomotor Apraxia, but, I didn't think it should be listed, as this is not related to the hypotonia. Low muscle tone is often a "symptom" of a greater problem, so it's likely that you may need to see additional specialists to treat the core problem.

Overcoming Low Muscle Tone: Playing at home

This post is fourth on the series "Overcoming Low Muscle Tone". To read the previous post on the series, Gear, please click here.

Setting of the play area:

During Patrick's first year of life, his playing area was our living room. We had this puzzle foam mat in both numbers and shape sets. I liked them because they were thicker than most so it was extra safe when he was learning to sit on his own and would occasionally fall to the sides.

By the time he was a little over one year old, we had our basement fully finished, which included a big playing area for Patrick. By then he was scooting around (not crawling, let alone walking!) so I bought these gates on Craigslist to make sure he wouldn't scoot to other areas in the basement that were not safe for him. Well, it turned out that was a bad idea.

His playing area looked like a gated area with tons of toys on the floor. His physical therapist then pointed out that I was better off securing the particular places I didn't want him to get to, and open his space so that he would be more motivated to move. So I put away the gates (a few of them went to surround the TV stuff) and I bought baby gates to block the stairs and the hall to the bathroom. With this changes, he had a more open space to move around, but that wasn't enough. I had to move all the toys from the floor and place them on a table so that Patrick would make the effort to stand.

A couple months later he had mastered standing and going back to the floor. The next step was to make him to give steps. That's when his therapist suggested to change the layout of the playing area, and add a few more "tables" close to each other, each with toys on top, so that Patrick would move from one "table" to the other one. I can't find any pictures of how it used to look back then, but if I come across one later, I will update this post with said pictures. In the meantime, I'm posting a picture I took just for this post. Below you can see the "table" which is nothing but one of the plastic shelves I stole from my husband's shed.

These shelves are very sturdy so I never worried about falling over Patrick, yet they are light enough for me to move around easily. They provide plenty of surface to place many toys, and the height is just perfect for toddlers 1-2 years old (Patrick is 29 months on that photo.) Best part is, I didn't have to pay for them! And even if I had to buy them, they can be stacked later to use for what they are meant: Shelves!

You have to keep children entertained and encouraged to crawl, stand up, and later walk to reach things of their interest. Putting some toys away, and bringing new ones every month or two is a great idea. I'm not saying you have to buy toys every month, but, kids get toys constantly and not only from parents, (think Christmas time, birthdays, when the grandparents are around...) so don't give him all the toys at once, rather, give him a few and put away the rest. In a month or so, you can put away the ones he has mastered playing with, keep his favorite ones, and bring in a few more from the closet. Once you have ran out of new toys, bring back some old ones that are still age appropriate. To get some ideas on what toys are good for your child, you can read this post.

It's important that you change the layout of the playing space in a way that meets your child's needs. As children grow, they are able to do more things, so you have to keep challenging them. Is he sitting up? Then is time to work on making him crawl. Is he crawling? Time to work on making him stand. Is he standing? Then is time to make him walk. Is he walking? Provide plenty space for him to run. It doesn't matter how big or small your house is, you can always find a way to re-organize your furniture so that your child has the appropriate space to fulfill his needs.

Overcoming Low Muscle Tone: Gear

This post is third in the series Overcoming Low Muscle Tone. To read the previous post in the series,  "Toys", please click here. To read the first post, in the series, "Activities", please click here.

GEAR:

a) Ankle/Foot Orthotics (AFOs)

One thing that helped Patrick to stand and walk were his braces. I was told by the Physical Therapist that Patrick needed ankle support, because his feet pronate quite significantly. She said this was common in low muscle tone children, and recommended me to take him to Hanger Prosthetics and Orthotics, to get his measurements. When I called to make the appointment, I was told that a prescription by his Pediatrician was needed beforehand.

That was because they don't necessarily diagnose, rather they just take measurements and order the product. Their expertise helps them decide which type of AFO will be best for your child. The price you pay for the braces includes the appointments needed (measurements, pick-up and any follow-ups) so all these office visits are free of charge. The person who sees Patrick there told us that after using the braces for a little while, we would start seeing significant improvement in Patrick, and he would be walking in no time. He was right!

They suggested that Patrick used the SureStep brand, and while all the information is on the website, let me tell you our personal experience. I'm happy with the product. Patrick didn't mind using them at all, and they seem comfortable. Definitely provided the support he was needing. For some reason I thought the braces would help to correct the problem, but later I was told that mostly they provide support (his body is definitely more stable when he is wearing them.) I think my only complaint is that the straps on his second pair ripped... for something that's billed so high to our insurance (2k+) you would think the straps would be made of a better material.

The first pair of AFOs lasted about 6 months until he outgrew them. He is now on his second pair since the beginning of February. He had to wear the first pair almost all the time, but he isn't required to wear it as much now. I was under the impression that he would need to use the braces for a number of years, but surprisingly we have been told that this may be his last pair. As his muscles get stronger, his ankles should get better, but the problem won't disappear completely. It isn't so bad, considering that there are many people, including athletes that have pronation but are able to perform physical activity just fine.

b) Shorts (Hip Helpers)

One thing that got Patrick started on the crawling were this shorts. They were suggested to me by his physical therapist. This shorts help kids force kids to crawl, or at least, prevent them from scooting, which was Patrick's favorite way to move around, as you could see in the video I showed on the first post on the series.

On the Hip Helpers website you will find that the shorts are also a good aid for children that like to sit with their legs wide open or in W position. Patrick used them briefly, but I think it was worth buying them... he really couldn't scoot the way he wanted, so he had to figure out other ways! It's too bad I actually don't have pictures/videos of him wearing them so you could see, and right now they are too small for him. I hope you can get a good enough idea on what they are like on their website!

c) Chewy Tubes

Also, per suggestion of Patrick's therapist, we bought him a chewy tube, more specifically, a "P" chewy tube. That's the website that was suggested to us, but I believe I found it cheaper (or at least with free shipping!) on Amazon, so you can check there too.

Chewy tubes are great alternatives for little ones who need to practice their biting and chewing skills. Patrick had low muscle tone in his mouth -it was difficult for him to chew food that wasn't soft. Also, he liked (still does to some extent) putting everything in his mouth, more so than the reasonable stage that every baby goes through when exploring new surfaces. The chewy tube is hard, and has some scent/flavor that makes it more attractive to the child, giving the sensory input needed to aid in the mouthing.

I have to say, though, Patrick wasn't a fan of the chewy tube. His jaw eventually got stronger, mostly by the fact that we kept introducing progressively food that wasn't too soft, and by the fact that he likes mouthing so much to the point that anything would go to his mouth, including blocks and other hard things. If you do try it, I hope you get better luck with this product!

Overcoming Low Muscle Tone: Toys

This post is second in the series Overcoming Low Muscle Tone. To read the previous post in the series, "Activities", please click here.

a) Shopping cart
We got this shopping cart for Patrick, although I found it at a goodwill for $7. I have to say, he was interested in using it only until he had learned to stand with support and he had started to give a couple side steps with support of the furniture. This toy is great because it motivated him to move (we used it outside -he loves outdoors) and you can add weight to it to fit your kid's needs, like putting toys or things he wants to move around.

A cheaper alternative? You can use a lightweight stroller if you have one. Also, the Trader Joe's store by our house has little shopping carts, and I heard some Giant stores do too (not the one by us though). Check at the stores near you if they have any and let your little one help you with some shopping.

b) Ride-on toys
Ride-on toys are GREAT for toddlers with low muscle tone. If they want to go anywhere, they will have to use their legs. A friend of us gave Patrick this one, which was great because he liked the noises every time he bounced, so he was constantly bouncing, making his legs stronger. Also, there are other ride-on toys that have a little storage area, and you could place cans or something heavy inside to make your child work harder to move, once he has mastered the use of it.

Patrick has now a lil quad, but I would not recommend this for your low muscle tone child, until he has gotten strong enough to walk and move around on ride-on toys. You can read this post I wrote to learn why.

c) Trampoline
I bought this trampoline for Patrick and despite the not so good reviews, he likes it. It is a bit expensive though, but he has had it for almost a year and still looks like new. He used to get on it everyday, but not much anymore. At first, when he couldn't stand on his own, he liked climbing on it and getting out of there (it has padding so it is safe) so even then it was entertaining and helpful for his low muscle tone. Then eventually he learned to jump on it and he enjoys it and I'm sure little Robbie will get some use out of it as well.

d) Gym ball.
Children with hypotonia lack strength and balance. A gym ball will help with both. There are exercises you can have your child do on a gym ball, here are two ideas:

1.- Place your child upside down on top of the gym ball. Slowly, move the ball forward, and help your kid to not fall by placing his/her hands on the ground. This activity will help mostly with the upper side of his/her body.

2.- Place your child sitting on the ball. Slowly move the ball to all sides. Your child will try to stay on top without falling, therefore making him learn to get more balance and more strength.

An alternative? Your back or your partner's back. Place your child sitting on your back while you bend on knees and hands on the floor, then move around while he rides on. The more you move your back, the more balance he will need, and it is fun, too! It helps if you have your partner or someone with you to help hold your child while you move to prevent falling, or at least try to do this activity on a padding surface and be ready to catch your child in case he looses balance.

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These toys are helpful for hypotonia kids that already stand with support. We addressed Patrick's hypotonia until he was 1 year old, so I don't have much insight for infants. However, I may write about  hypotonia in infants in the upcoming months, as it looks like our baby Robert also has hypotonia.

Overcoming Low Muscle Tone: Activities

Many people are drawn to my blog searching for information on Hypotonia. I have been writing a series of posts about the things that helped Patrick in this regard, which I will be posting throughout March. We have been working on his hypotonia for a little over a year... He went from not rolling over, not crawling and not standing even with support at one year of age, to completely running by age 2. It isn't a quick process. He has come a long way, but there is still much to do, like making his legs stronger so that he doesn't fall too often when running or walking on uneven surfaces.

From activities, to specific toys and clothing, there were a number of things that helped Patrick improve his low muscle tone significantly. There is a lot of information out there about what is hypotonia (here is a great compilation) so I will just focus on the specific things that helped my son.

To begin the series, below are some activities:

a) Climbing stairs

If you have stairs at home, teach your child to climb! There is no better exercise for his legs than this. It helps if you can place toys or things of his interest on the second or third step, so he will have to stand to try to reach them. Even if your child doesn't climb at the beginning, just by standing and going back to the floor will be good enough... imagine all the squads!

Take him to playgrounds and make him try to go up and down the steps to get to the slide.

Patrick wasn't interested at first, it took a little while for him to be interested on going up the stairs, so don't get desperate. Just keep trying!

b) Soft playroom


There is a RECenter near my house that has a soft playroom. It's awesome. The fee is $5 and Patrick can play there for as long as he wants. It's totally worth it. It's the perfect place for children with low muscle tone because they can't get hurt if they fall. The only problem? When is time to leave. Patrick loves it so much he never wants to leave!

If your ReCenter doesn't have a soft playroom, check out your nearest mall. Some malls have children areas, and usually everything in it is soft and safe -perfect for hypotonia kids! The best part is that these areas are free of charge. In the video below, Patrick (at around 18 months old) is playing at one of these areas at the mall. By then he had learned to crawl up the slide, but scooting on his buttocks was still his favorite and easiest way to move from one place to another (he couldn't crawl or walk). You may also be able to see his ankle/foot orthotics which he is wearing to help with his pronation.

You can buy the soft play shapes online in sites like this one, but as you can see, these things are pretty pricey. An alternative? Pillows at home. You can recreate your own soft playroom at home by placing pillows and blankets on the floor. Make your child work his way through a pillow if he wants to reach a toy, or reach you. Place soft obstacles in between baby and you, and he will be crawling/climbing in no time!

c) Parks!

Why are parks, water parks and overall outdoor activities so important? Please read this post I wrote not too long ago.

d) Cruise around furniture

You may have to re-arrange your furniture in a way that your child can cruise around. Place sturdy furniture close to another piece of sturdy furniture so that your child can cruise from one to another, like moving from a couch to the coffee table, or from the couch to a chair. You can also try placing him standing on one end of the couch, and put toys on the other end and encourage him to reach it. With Patrick, it helped to put the laptop on the other end... he wouldn't move to reach the toys, but he did move to reach my laptop!

This post, "activities", is just Part 1 on the series, stay tuned for the following posts!

Developmental Evaluation Results

The title of this blog, Overcoming Tiny Obstacles, couldn't have been more accurate to what we are experiencing... as the times goes by, I get more convinced about it. It's one obstacle after another. Tiny obstacles, but obstacles at last. Trying to overcome each one as they present, and praying and hoping that they don't get bigger, or more difficult, and that once and for all, they all disappear. But that's not happening... not just yet.

Just when we got all excited about the huge improvement of Patrick's low muscle tone, we discovered that his ability to talk was affected too. We thought that by being able to explore (by running, climbing...) the same way as his friends, he would reach the same developmental stage as them. But then speech delay came along and we realized how important was language in the learning process. How can he understand abstract concepts, like counting or feelings, when he can't even name the very basic ones?

Could I have prevented Patrick's health issues?

My husband and I had been married for a year and a half when we found out we were pregnant. I told him the news on his 30th birthday and we couldn't be happier.

When I had my first OB visit, I was asked to fill out a form that had specific questions about my lifestyle and background. Do you smoke? Do you drink? Do you exercise? What's your race? Marital Status? Age? Number of Pregnancies? Miscarriages? And then a long list of illnesses to which I had to write whether we or any member of our families ever had.

Raising a child with a disability

Is Patrick a "special needs" child or a child with a disability?

I truly don't know. I guess I could say he has a disability in the eyes, because he can't follow well fast moving objects. I guess I could say he has a disadvantage in his muscles, because they are not as strong as other kids'. I guess I could say he is a special needs child, because, well, he requires some things that other kids don't, like AFO's, and therapies, and constant evaluations and so forth.

But then it just doesn't feel right to compare my son to a child that has some type of syndrome, or severe physical, cognitive, or developmental delay. It's not fair to the other moms of these children to compare what I have to go through to what they have to go through. You see, I have it easy compared to them. And Patrick has it easy compared to those children. He gets to take physical therapies, but just to strengthen his muscles, because he can do physical stuff. And he takes speech therapies, but just to get him up to speed, because he can talk. He needs AFO's for his feet, but just to give him support, because he can walk (and AFOs are like getting orthodontic braces, really) And he has this rare disorder called Oculomotor Apraxia, but, you know, he isn't blind.

So if Patrick falls into a special category, I don't know which one would be the appropriate one. In the meantime, I wanted to share this beautiful explanation I read some time ago of what is to have a child with a disability:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

The importance of play dates and outings

I joined the mom's group at my Church right around the time we found out about Patrick's Oculomotor Apraxia. They have weekly meetings, but after the holidays, Patrick began to take his physical therapies, which were set for the same day (and time) that the moms met, so I was able to attend only twice a month.

But then it wasn't fun to attend.

Patrick couldn't play with the other kids. He was too scared of them. Imagine a room with 10+ kids running around, being loud and playing with several toys moving from place to place, at a fast speed while the only thing that Patrick could do was to sit next to me and play with whatever I placed within his reach.

One day the moms suggested we should meet at the RECenter. Unfortunately they met on a day that Patrick had physical therapy so I couldn't attend, but I told my husband we should take him that weekend. I was so excited about that outing because they have a spraygound and Patrick loves playing with water so much.

But then it wasn't fun to be there.

All the kids were walking around, but mine couldn't. As soon as I sat him in one spot, he didn't move. He seemed happy to play with the water, but I wasn't. I wanted him to chase other kids, to move from spot to spot and enjoy all what the sprayground had to offer. I left him there for few minutes and then I tried to move him to a different spot, but he misunderstood that with "time to leave" so he started to scream and cry, so I left him there. And he stayed there all the time, ALL the time.

Patrick's very own spot at the sprayground. 

One day, Patrick's physical therapist said Patrick needed to go to the park often. I wasn't used to taking him to the park. The thing is, Patrick had been in a few parks before, when he was younger, we took him a few times and we put him in the swing. Once he got older, old enough to run around the park, we took him again.

But then we didn't enjoy the park.

He was old enough to run around, but he wasn't running. Or walking. Or climbing on anything. Or even standing. So we bought him a swing. And a slide. He was able to have a tiny park at home, that he could enjoy at his own peace. Taking him to public places where other kids his age were doing things he couldn't do wasn't fun for me, because I figured it had to be frustrating for him to see the other kids doing things he couldn't do.

The swing at home

Slide at home. We had to placed him there.

Was it always going to be like that? What if he could never walk? How could I comfort him every time he wanted, desired, wished, to do something, but he just couldn't, while the other kids could and would? Were other kids going to make fun of him? How could I protect him from them? What would happen when he would become completely aware of his limitations and disabilities? Would he cry, too?

But the therapist insisted.

And so I had to suck it up and had to keep taking him to the moms group. And to the sprayground. And to the park.

And she was right.

Soon after, Patrick began to improve his muscle tone, and it happened fast. Being around other kids made him want to do things, so his muscles kept getting stronger as he tried to do new things. He was imitatating other kids, and it was wonderful. Eventually he stopped crying at the moms group. Eventually he started climbing on the slide. Eventually he started to walk around the sprayground. The more Patrick was spending time with other kids, the more he started to improve.

Patrick wanted to be out there and he needed to be there, with other kids, so he could socialize, and learn, and imitate, and explore, and play... and be happy! Just like the other kids were. My boy just needed exposure and time. Time to learn from the other kids and time to practice.

Patrick at the Sprayground having some fun.

  

Patrick saw another kid doing this earlier, so he did it too!

  

At the moms group. Not scared of any kids anymore!

Climbing, climbing, climbing. Yes! He loves the park!

And that's the importance of play dates and outings.