Saturday, April 10, 2010

Oh the challenges...

I love my boys. Truly. They are both amazing kids and I am so lucky to be their mom. Every day, Sebastian is becoming a more incredible kid. And Sullivan, I am absolutely blown away by him and his potential. Yesterday, he was putting together his own pizza with the Melissa and Doug pizza set. It was so neat to watch. Nobody showed him, he just figured it out from watching his brother play. Truly, impressive. I have fun with them every day. We dance, we sing, we run, we play. Life is beautiful and they make me smile all the time.

Some days though, I feel a little bit blah. Let me explain. By now, if you've been reading this blog for any length of time, you will know that Sebastian was born premature. He was born at 28 weeks, and he was super sick when he was born. We were not given any guarantee on his outcome, whether or not he would live, and what kind of life he would have if he did live. Really, it was stepping into the complete unknown. The only thing they knew for sure, was that if the pregnancy continued, he would die. So, we went ahead with the emergency c-section. He was born, ventilated immediately, and his roller coaster began. I won't go through all that again, because, well, been there, done that. But suffice it to say, a baby is supposed to be inutero for forty weeks. Twenty-eight weeks, really isn't ideal. Not by any stretch. And the time missed inutero, has an effect. There are consequences for that missed time. Those consequences vary from child to child, from case to case, from family to family. Sometimes there is almost no leftover remnants of the lost time, however, in most cases there are consequences and they range from very mild to very severe. Sebastian is fortunate that most of his challenges have been fairly minor in the huge spectrum of things he could be facing. But those challenges are there none the less.

The older Sebastian gets, however, the more we learn about some of the consequences of being born that early. Now don't get me wrong. For the most part, he's a regular little boy. But there are some things. Like his glasses. He ended up having very severe ROP and had to have surgery so that he would not go blind. Of course a side effect of that, is the glasses. It's not a huge deal, I understand that, but it still limits him in some ways. Had he been born fullterm, he would not have had ROP.

And fine motor. He is very delayed with fine motor skills. Again, it's not super serious, but he just turned four, and has the fine motor skills of someone who just turned two. So, what does this mean? Well, unlike his peers, he can't use a fork or spoon very well. This is a huge challenge for him. He can't undo or do up his pants. He can't do up zippers on his own. He can't draw or write anything. I know these aren't the biggest deal, but they are things we have to work on, things that most other kids his age can do. And he's working on it, my goodness is he ever. But without a doubt, it slows him down. I hope he will catch up. We are told he should, but it's suddenly becoming harder to be a parent, watching him be challenged by things that others pick up with no issue.

Part of me feels so guilty for the challenges he has. I don't think I have any reason to. But I just feel like, if he hadn't gotten so sick in utero, and didn't need to be delivered early, that he would be just fine now. I wonder if I should have done things differently during the pregnancy, yet what could I have changed? I didn't drink, I didn't smoke, I exercised, I ate a variety of foods. I drank water. I took my vitamins. I did all the things I was supposed to. Well, I broke my leg, or better yet, my dog broke my leg. And I wonder if that somehow caused the rest of the issues. The doctors said it did not, but the doctors could not find a reason that he got sick in the first place. I mean, I know I can't look back and second guess everything, but I just hope there was nothing that was in my control that could have prevented this.

Now, having a fullterm child, I am becoming more aware of how much extra work Sebastian has had to do on many of his skills. Sullivan picks things up no problem. He has incredible fine motor skills, probably equal to, or better than his older brother. He grasped the concept of eating immediately, with very little assistance required. He is already trying to dress himself. He is keen and interested in everything around him. He loves the outdoors. Very little slows him down. It has been a totally different experience. And I truly appreciate that.

On Friday I met with his preschool treatment therapists to learn about the assessments they had completed. He rocked the language and speech. I mean, he is doing amazing!! He has the vocabulary of someone who is 5 years, 8 months. He speaks clearly, is easy to understand and uses good grammar the majority of the time. Amazing. Awesome. Way to go little man. Gross motor is still a little behind but not too much. Fine motor, while, I already spoke of that. He measures very low on the spectrum. And we knew he would. And this explains so much about the things he isn't doing. And we know where we need to work.

But, we were confronted with a whole new set of issues. Related to sensory inputs and overloads and stuff like that. It was tough sitting there listening to them talk about it, yet it again, explains a lot with some of our challenges with Sebastian. His unusual sleep patterns, his challenges with food, and more. I asked if this is something he grows out of. They said, he was born at 28 weeks, there are consequences to the lost time. One of them is the heightened sensory inputs, and no, that will not change. Will he end up with a diagnosis? They don't see that at this point, but he will need to learn to find outlets to help him cope with the information that comes in at rates and ways he can't handle. He will meltdown, he will run, he will figure out what he needs to get to his happy place. And it helps explain his eating even more. Between all the tubes that were shoved down his throat, and what not, his mouth is ultra sensitive. He has a very hard time eating things of a certain size, or texture, or what have you. So, aside from having the challenge of not being able to use a fork or spoon very easily, he also has a hard time with sensory overload in his mouth. And in the end, is happiest drinking. It doesn't send funny messages to his brain. And when he has difficulties at swimming putting his face in the water, it's not just about putting his face in, its about what's happening to his ears and eyes and hair and everything else. Even though he works really hard to do this, his brain sends messages that counteract what he's trying to do. I still don't understand everything they were talking about, as this was totally new and not something I expected to be jumping into that day. But, we will have to work with him on this stuff, and help him find ways to get to his happy place.

So, for anyone out there, please be patient. He doesn't always get the correct message when you are talking to him. And sometimes, other things in the world around him distract him to a point where he just can't handle it. So he might get totally fixated on one thing. That might not be the hill to take a stand against him. His eating likely won't be that great anytime soon. And it's okay if you help him with his pants or with a zipper. He's still learning, and may take awhile to become more independent. It's okay when we have to help him eat, or he won't. It's okay if we help him get his socks and shoes on, or he'll just go without. It's okay if we help him with the bathroom, even though he's potty trained, that doesn't help with the fact that he can't do up his pants. So, we will keep working on things. We want him to succeed just as much as anyone else. We aren't trying to take away from his potential, we are working with him to reach it. He might look and sound like any other kid, but he is dealing with an extra set of things that other kids might never have to. That's a lot for him to carry, but he does it well.

I love my boys. They are both amazing and they are both very much their own person. I will be forever grateful that Sebastian is with us, as I know his odds were extremely dismal in his first weeks. And if the price he has to pay to be with us is in some of these challenges, then I will help do whatever I can to give him the tools to succeed. And yes, I'll be a little sad that things are more challenging than they should be. But for the amazing little kid that he is, I wouldn't miss it for the world. And in Sullivan I'll appreciate things they way they usually go. They really are both great kids. And watching them play together and chase each other around the house laughing the whole time, is so worth every moment. Thank you Sebastian for helping me develop patience and an ability to stand up for you and what you need. And thank you Sullivan for testing that patience and keeping me in check. I know I have a lot to learn yet about being a parent, but I have the greatest little teachers!!

1 comment:

tease-spoon of sugar said...

Hi there! Found your blog through the Daring Kitchen website. Firstly, based on your review, I am going to have to buy that book. It sounds great. But more importantly, your blog really spoke to me. I, also live in Calgary and I have a special needs daughter who is turning 5 soon. My second child is typical so I know how it feels to watch your youngest breeze through stuff that your eldest struggles with. Anyway, I just wanted to say hi and tell you that I really enjoyed reading your story, and to thank you for sharing it. My blog is pretty much all food related, not because I'm uncomfortable sharing that part of my life, but because I use the blog as more of an outlet - which all moms need (as I'm sure you can relate!) Your story is touching and inspiring. You can look me up on the Daring Kitchen website if you like (tease-spoonofsugar). Good luck with everything, you are definitely an inspiration. Sorry for the super long comment - could have gone on for pages!