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.
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.
