Tuesday, October 20, 2009

Brotherly Love

I never cease to be amazed to witness the dynamics that go on between siblings in our home. The most fascinating, I think, is Number One. He has very little tolerance or patience for The Beast most of the time. When he has those moments where he is willing to work with the Beast, though, it's like they're shining moments. He can be so loving and creative with his younger siblings.
The relationship he has with Little Guy is one of pure love. He speaks calmly to Little Guy, pays attention to the little details (like whether or not he's blue...okay, maybe that's a bigger detail), and is just generally protective of him. They have an unspoken love for each other.
Like with The Beast, when Number One decides to show his love, it's a shining moment. As you can see from the look on Little Guy's face, the feeling is deeply mutual.

Pumpkin Fun

Who says people with special needs can't have a great time?! Each Monday night, we have family night. Sometimes we play a silly game, sometimes we go somewhere fun, sometimes we just hang around and sing songs. It just all depends on the night (and the mood of the children). This week, we decorated pumpkins. We don't usually carve them because pumpkin guts make Number One break out in hives.

I got a variety of crafting supplies, and we went to town. Little Guy's is the one with the canula (it's a real canula that he isn't using anymore. I made the hearing aids out of pipe cleaners). Snort's is the one next to Little Guy's. I thought they came out pretty darn cute myself. :)

Look Who's Standing!

Well, okay. So, maybe he isn't standing totally by himself. But he is finally pulling himself up to a standing position on things. That is a big accomplishment. We're really excited to see that he is slowly building up more lung stamina. He used to be just too tired to work more than ten minutes or so without a good long nap. He worked the full hour with Ms. Kristi. It could be due to the fact that she completely adores him and he knows it. The fact is that he's got her wrapped around his adorable little finger. Just look at her in those pictures totally in love with him!! Ms. Kristi is his Deaf ed. teacher (and the Beast's, too!). We love when Ms. Kristi comes because she brings some great new toy every time. This week, it was some stuffed animals that sing and light up. I think Little Guy is totally in love with them...and perhaps with her. I don't know how I'll ever break it to him that she's taken.

We're hoping he can keep up the great work. He was diagnosed with RSV today, so we're watching him very carefully. So far, so good. And that's the way I hope to keep it.

You may have also noticed from the pictures that he has big tubing coming down. That's the corrugated tubing we bought and string his oxygen tubing through. It works great at preventing him from strangling himself, preventing siblings from twisting it, cats from chewing it, and well...let's just say it's been truly a life saver.

Friday, October 16, 2009

Hannah Andersson Pilot Cap Ordered

So, I decided to finally give in and order Little Guy the Hannah Andersson pilot cap. With the Beast, bandanas worked great to keep him from taking out his hearing aids. For Little Guy, not so much. He can get those babies out of his ears and into his mouth in the blink of an eye.

I'm not horribly excited about the pilot caps, but at least it's fall. He won't look like too much of a weenie wearing a hat in the fall and winter. I tried to choose the least weenie-ish colors, too.

The reason it had to be this particular kind of hat is because the material is thin enough that the sounds can still get to the microphone on his hearing aids. Anyone else have any other fabulous ideas on keeping those aids out of his mouth? It doesn't help to provide him with constant oxygen if he's just going to choke to death on a hearing aid anyway.

And, of course, pictures will come as soon as he gets his new caps!

Tuesday, October 13, 2009

Why Me? Why Not?

With the current poor economy and the outbreak of so many illnesses and the increase in autism and whatever else one can think of, I've noticed a new sort of disease. Why Me Syndrome. I have some thoughts on this that are mine and mine alone. I'm going to share them and you're welcome to read on with the understanding that I'm in no way trying to be unsympathetic to the plight of those who suffer. On the contrary, my thoughts and prayers are continually with those who weep, suffer, and are heavy burdened.

I think it needs to be put out there that no person is ever going to be exempt from pain and suffering at some point in life. Why, then, do we often find people crying "why me?" when bad things happen? Sometimes I feel like the only answer I can give is "Why not you? What have you done to exempt you from ever having undesirable things happen to you?"

Let me explain myself. It's my firm belief that muscle can only be built through hard work and endurance. The same goes for emotional and spiritual muscle. If we don't have opportunities to endure, we don't have the chance to build our emotional and spiritual muscle. While times of trial and tribulation can often seem like a dark tunnel with no light in sight while we're in the midst of them, it's undeniable that we come out stronger because of them. We may not see it right away, or maybe not ever in this life, but the painful hardships we endure today are providing the framework for the stronger, more capable people we have the potential to become tomorrow.

I get asked the same question all the time. It's not always phrased the same way, but the jist is the same. "How do you do it, Aimee? How do you handle five very young children, three of whom have special needs? Do you ever wonder why you are the one with these children and these difficulties?" I'll tell you how.

It's very simple really. I was taught from a very young age that the trials we face in this life are God's way of complimenting us. We are told that God won't ever give us more than we can handle with His help. If He honestly believes that I can handle all that He's given me, He must think very highly of me. And that is a compliment.

Another thing that leaves me feeling okay about mothering these particular children is greed. Plain and simple. I'm greedy. I know beyond a shadow of a doubt that enduring to the end will result in guaranteed blessings, and I will do anything to earn more. I know that these blessings come because I've experienced it first hand. I won't go into the details, but suffice it to say that my family and I have had far more goodness in our lives than we've had hardships. It's not even always so much in a spiritual sense. Sometimes it's just plain and simple happiness. Before we had children with special needs, we were unable to see the amazing details of day to day life. We didn't realize how amazing it is to see your child walk for the first time, or to hear him utter his first real word. We took good general health for granted. The task of breathing in and out while still keeping our hearts pumping was mundane and never thought of. Now, I relish the time I spend just watching Little Guy breathe in and out and in and out. And I'm happy for those things.

I think there are many people who live by the misguided notion that living a life that is good and faithful to whatever religion they embrace should exempt them from pain. The truth is that there is really no "vaccine" for hardship. No one can prevent it from spreading to themselves. Living a good and faithful life is simply one way to find the tools to face pain head-on when it comes. When we live by the principles of some gospel and have a belief in some sort of God, we give our lives a sense of purpose and meaning. We give ourselves an outlet through which we can seek out peace and comfort. All of these things can ease the pains we suffer, though they can't prevent them from coming in the first place.

Setting aside the spiritual aspects of it all, I have to ask why NOT me? Were I to sit down and cry and pout and beg someone to explain why me, I would hope someone would point out that I am no different than any other person on this planet. I don't come with some special ticket that allows me to go directly to the front of the happiness line. Last I checked, there was no "get out of jail" card for pain and suffering. Why and how could I for one minute think to myself "why me?".

If not me, then who? Who would I see fit to suffer my pains and frustrations and disappointments? What makes me so much better than anyone else that I should think I don't "deserve" this to happen to me? Really, who does deserve to suffer? Is there one person more deserving of afflictions like cancer than another? Does one set of parents "deserve" a perfectly healthy baby more than another set of parents? Does one baby deserve to come into the world and become part of a healthy well-functioning family more than another baby? Were we really able to decide who to give pain to, how would we decide that? How, as a society, would we decide why one person over another?

I'm not going to lie. It's not easy. I've had frustrations time and time again. I've had times where it just seemed like one bad situation after another was piling on me. There have been times that I've felt that I just needed to sit down and cry, and that's precisely what I've done. Just cry. I get tired, so very tired sometimes. Sometimes I want to run and hide because I feel woefully inadequate for the responsibilities placed before me. On occasion, I have to acknowledge that it hurts to know that so many people look at my children with pity. Who wants perfect strangers to feel sorry for their children? No, it's not easy. It never has been.

To those who ask me how I do it, I want to say that I really can't imagine not doing it. Mothering these children is what I was born to do. They are my purpose. I don't know that I had the tools to provide all that they needed from day one, but I know I've worked hard to gain those tools, and in so doing I've become a better person. Facing my hardships head on has made me a stronger person in so many aspects of my life. I've looked the fear of failure in the eye and beaten it. I'm by no means the perfect mom. I never will be. But I, with all of my shortcomings, am the perfect mom for them. That I know for sure.

I don't know that my ramblings have made any sense in terms of the Why Me Syndrome I see so often. My point is simple, though. When we sit down and cry, why me, we miss out on seeing the opportunities for growth right in front of us. Whether it be growth for our caregivers in our times of physical weakness, or our own opportunities to gain knowledge, or simply the opportunity to come to really appreciate life for all it is, the opportunities are there.

My plate is full. All our plates are really overflowing with stress, worry, pain, frustration, and whatever else is weighing on us. I can't ask why me because I honestly can't think of one reason why NOT me.

We Survived Another ARD

The Beast finally had the follow-up ARD after all of his testing was done. There isn't really a ton to report. They say his IQ is average, but acknowledge that it was a "heavily linguistic" test and was given orally. Okay, so you gave a profoundly Deaf kid an oral IQ test and he still managed to come out average? Think that might mean he is probably a little higher than that? Yeah. Me, too. At least they admitted that they agreed with me on that one.

As for speech testing, they did lots of "hearing children" testing and he's normal, so they're dismissing him from speech. I'm fine with that, but I'll be watching closely since they didn't really give him an auditory processing test. They just sort of observed him.

In defense of the school, I do have to admit that the Beast is a tough case. He is Deaf and that qualifies him for lots of services. On the same token, though, he's not the typical Deaf kid. Were it not for the processor on his head and the hearing aid in his left ear, you'd never know the kid is totally Deaf. I guess that's a good thing. I do still worry about him slipping through the cracks now and then, though.

So, that's about all there is to report on his ARD. I'm so glad we got him the teacher we did. She was the perfect choice for him. Sweet, soft-spoken, and not going to take any crap from him. If anyone can help him break from his defiant streak, she's the one to do it.

Thursday, October 8, 2009

First Kindergarten Report Card

You may remember my post about Kindergarten not going so well. I had some serious reservations about the way things were going for the Beast. And I worried. A lot. Luckily, I had the foresight to get the Beast the very best Kindergarten teacher in the entire school district. And I'm not disappointed.

We got his first ever official report card today. He has an M (mastered) in all but social studies where he has an S (still working). Couldn't ask for more than that. And, to top it off, his teacher found only positive things to say about his behavior. She did acknowledge a need for some improvement in a few areas, but she says it in such a positive way that I can't help but be one proud momma. And I am.

A Happy Call from the Pulmonologist

Little Guy's pulmonologist, Dr. Sanchez, called today. She got the results of Little Guy's sleep study, and decided to pass them on to me. I couldn't be more thrilled!!! According to the sleep study, he no longer has an obstruction when he's sleeping!!! We were having to put him on 2 liters of oxygen while he slept. Now, he only needs .25 liters while he sleeps!!! It just doesn't get any better than that, does it?

He's also crawling everywhere, seeking out opportunities to communicate with people around him, and has mastered the art of eating his hearing aids. I did buy him a lovely new halloween bandana to go over his aids. Think that'll deter him from eating them in the future? Nah. I didn't think so, either. I'd be bummed, but I'm too excited about Dr. Sanchez's call.

Sunday, October 4, 2009

Greasy,. Grimy, Grody, Green Beans

Little Guy is hitting mile stones like it's going out of style lately. He's army crawling, "talking", reaching for everything in sight, and putting anything in his mouth he can get his hands on. Well, almost anything.

Green beans are not Little Guy's favorite. He happily eats all the fruit I can offer him. He slurps it off the spoon with vigor, and can't wait for more. I decided to go ahead and offer him some most delicious veggies in between bites of fruit. As you can see, it didn't go so well. Just from the look on his face, you can see that he's most definately made his opinion known. "Please, Mom, no more greasy grimy grody green beans."
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Friday, October 2, 2009

A Proud Accomplishment

A few weeks back, I received a comment about a website called http://www.wellsphere.com/. The poster was one who oversees a variety of blogs covering thousands of health related topics. She invited me to apply for my blog to be a regular blog for her website. To my suprise, my little blog was accepted. To visit wellsphere, you can simply click on my handy dandy little badge in teh upper left corner.

I welcome and look forward to lots of new readers, and I sincerely hope that what I have to say here is helpful to someone somewhere.