Tuesday, September 29, 2009

So, I Finally Took Them to a Geneticist. And I Hated It.

Ever since the Beast was just tiny, Dr. Peters has suggested taking him to a geneticist. He had one he highly recommended, but I fought the idea tooth and nail. Somewhere inside of me, I just knew his hearing loss was "my fault". I mean, I know I didn't choose it for him, but we all know it came from my side of the genepool. My biological dad and his brother are both Deaf. We know that much. Beyond that, we just don't know much about him. Anyway, suffice it to say that I'd really put my foot down about it, and was not going to budge.

I actually stuck to my guns for years. When Snort started having vision troubles and falling behind developmentally, Dr. Peters suggested it again. Again, I gave a very firm and deeply emotional "NO!". I didn't want someone in a white coat with lots of letters behind her name pointing her finger at me and telling me this was my fault. I know. I know the questionable genes come from me. Why rub it in, right?

Then along came Little Guy. We knew right away that he was Deaf. Again, the suggestion came to do the geneticist thing. Again, I said no. It wasn't until Little Guy was out of the hospital with a strange diagnosis of a very rare lung disease that I finally (albeit reluctantly) listened to Dr. Peters. Today, I sucked it up and took the three youngest boys to see her.

I have to be honest. I hated it. I hated everything about it. From the intrusive, though I'm sure necessary, questions to the pointing out that my sons are all very small in stature compared to to the King and me to the comment about how fascinating it is that my children have such a vast array of disabilities, everything about the appointment just felt icky. I hated it. Really, I just wanted out. I wanted the walls to stop closing in on me and the questions to stop coming and the measurements to stop being made. I wanted her to be more patient with my highly inquisitive Beast and my overtired Snort. I wanted her to be more understanding of the fact that I hadn't been informed that I needed more adults with me and that I'd know that if I'd read her website. (Ummmm, that's interesting. No one ever told me about a website. Not pointing fingers, of course. I'm just sayin'...)

I'm sure there were good parts. She did seem very interested in my children's history, but I figure that, like all the other specialists, she's really just interested in learning more about my kids so she can present the case to a room full of white coats who see my children only as case studies, and not so much for the amazing individuals that they are. She was also very thorough. She checked them from head to toe, noted birth marks, and even inspected their butt cracks. (Anyone know why she'd check there? I'd love to know if someone would like to enlighten me.)

She let me know how nice it would be if they all had the same genetic "thing" going on, but all professed it in different ways. That said, she really didn't seem to think that was going to be the case. Still, she started by drawing the blood from just one of the boys. Since Little Guy was the only one who couldn't argue, he was the one who got poked. Luckily, he didn't even seem to notice. That's my brave little guy right there!! After those tests come back, I suppose she'll have more to go on and may look closer at the individual situations of each boy later.

I was totally up front with her. I told her I have no interest in knowing what she finds out. I mean, I guess my interest is peaqued just a little, but certainly not enough to want to know. Let's face it. DNA is really just an outline of what might come later. It tells us what disorders we may be predisposed to, or what causes certain parts of us (like Deafness or rare pulmonary disorders), but it doesn't really determine who we are. We determine that.

I remember when the Beast was just weeks old and a Deaf Ed. teacher came in and told us that it was likely he'd never talk and reading might get up to as high as a fourth grade level by the time he graduated high school. We lost so much precious time with him at that point because we were so wrapped up in what might be. We were so busy mourning the loss of our dreams for him that we failed to see all the reasons to rejoice in him. It was like an expectant mother who takes pre-natal blood tests and is told she might be carrying a Down's Syndrome baby. She worries, panics, frets, and fails to enjoy the time she has while that baby develops inside her. By the time the baby (who is usually perfectly healthy despite the testing) is born, the mother has spent so much energy worrying that she has to work that much harder to bond with the beautiful life she is holding.

I won't let that happen again in our family. I won't let some lab test tell me what might come to pass. I don't want to spend my children's lives always worrying that they might be predisposed to one thing or another. I want to enjoy them. I want today to be a special day where I just breathe in the moment and enjoy the children I have.

Up until now, we've always taken it one day at a time. We've had some surprises here and there. But we've dealt with them. I didn't have to worry and wonder when Little Guy would show us his breathing problems. It happened in its own time. And we handled it. I don't tend to worry about having babies with hearing loss. When they're born and are given the hearing test is when I decide whether to worry.

So many things could happen in life. We could be blown away by a huge gust of wind, be bitten by an incredibly rare, venomous and unknown breed of duck (I know. Slim odds.), step out into the street and be hit by a car, or be struck by lightening while on our daily jog. Many things could happen. Just imagine what the world would be like if we all sat around worrying and trying to prepare for what might happen. Look how much of life we'd miss. I'm not suggesting that we shouldn't be prepared for some things. I am simply saying that sometimes it's just better not to know.

So, that's what I told her. I don't want to know. "Share the information with my children's doctors so they know what to look for if you want. I just don't want to know. I want to love my children for who they are today, and not dread what the DNA says they might become tomorrow." I think she understood my point. She didn't bat a lash, but simply took note of it. I guess I did like that part of the appointment. She did say she's bound to tell me if she finds something life-threatening. Sure. I'll be waiting by the phone.

Anyway, there it is. I took them to the geneticist. And I hated it. I suppose that, if it can help other doctors prepare to help my children, then it was the right thing to do. If not, it was just a really lame way to waste a whole lot of time and money. Either way, it's done. And, for me, that says a lot. I took a big step today. And I hated it.

Monday, September 28, 2009

Kindergarten Progress

There is something about being the mom to a special needs kid that, I suppose, causes to me to feel like I have "something to prove". In my efforts to prove whatever it is in my mind that I think I need to display, I think that I often put too much pressure on my sweet Beast. I want so desperately for him to have a typical life and fit in like all the other kids that I forget that it's just not possible for him to have a typical life. Why? Well, because there is absolutely nothing "typical" about him at all. On the contrary, he is absolutely extraordinary. Everything he says, does, feels, experiences, creates, even breathes is extraordinary. How could I, a loving mother, ask my child to reduce himself to "typical"?

That's precisely what I was doing. Each day, he comes home with his little calendar. If the square for that day is colored, it indicates that he did something out of line or inappropriate in class. I was okay with him coming home on the green. That meant he took one misstep. That's not so bad. Then comes yellow, then orange. After that, the dreaded RED square on the calendar. It doesn't get worse than red. Well, maybe it does. White and black prison stripes might be worse. Maybe.

Anyway, I was having little heart attacks as each day went by and his chart started looking more and more like he'd tasted the skittles rainbow or something. Not good. I was bracing myself and remembering to breathe deeply each day. And, really, I was doing it very well. Then he came home on the red. THE RED!!! I fully expected an officer to arrive at the door to issue a warrant for his arrest.

I was taking away all of his privileges when he came home with these marks. It didn't seem to bother him much. This kid could find fun alone on an island. He'd just make friends with the crabs and giant squid. I tried a little bit of everything. Nothing worked to motivate him to just stay on the white. I begged, I pleaded, I bribed. Finally, I sent a message to his teacher expressing heartfelt apologies for his behavior and asking what, if anything, I could do to help him make better choices. Her response? "Chat with me after school." Ok. I could do that.

I went in armed with ideas to help make it better. I was fully prepared to invoke an ARD meeting if I had to. Being the amazing teacher that she is, she reminded me through her actions why I hand-selected her for him years ago. "Aimee, he's doing so much better. I know he still needs to work on compliance. But look at how well he's taking his consequences in class. He doesn't really need a punishment at home. He's already had it at school. And he's LEARNING from it all." WHAT?!?!!? All my worry, my sleepless nights, my...my...NEED to prove that he was okay was for naught??? You mean to tell me his teacher already knew? She already knew how to work with him? How to bring out the best in him? She knew he was teachable? And lovable? Special? It was as if a million pounds had been lifted effortlessly from my shoulders.

So, I don't know that it's the Beast who is growing and maturing in kindergarten. And, I really don't think it's his teacher he needs to grow in her ability to work with my special needs kid. The truth is that the only thing special about the Beast is everything. He is special, and extraordinary. I am the one with needs. As we've moved through these first weeks of Kindergarten, I'm the one who is doing the growing. I'm the one who is learning to work with, love, accept, and embrace him for the extraodinary person that he is.

I can't complain much. I'm just greatful for so much kindergarten progress...on my part.

Tuesday, September 15, 2009

The Hazards of Having a Sister

Luckily for Pretty, Little Guy is quite the easy going little person. Pretty has apparently given up on having any sisters and has instead resorting to using what resources she does have at her fingertips. Unfortunately for Little Guy, all the other boys are mobile. Since he's the one who can't go anywhere, Little Guy got to be the lucky one to wear Pretty's tiara. She was so proud of herself when she put it on him, too. It doesn't appear that he minded too much.

Actually, I think he rather liked the attention. Although he couldn't hear much of what we were saying, he could see us smiling and laughing with him. He began smiling and kicking his legs as fast as he could while making his favorite "wa wa wa wa" sounds. Those sounds have stuck with him, too. They're the sounds he seems to like making the most. I was very proud to see him performing for our auditory verbal therapist. Way to go, Little Guy! If wearing the tiara makes you talk like a king, then wear it to your heart's content!!
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Sunday, September 6, 2009

The Things You Learn About Others When You've Got a Special Needs Child

Friday was a crazy day for me. I was rushing around trying to get cupcakes to the Beast's class for school and still make it to Little Guy's earmold impression appointment and then back to town in time to get the Beast a cake and pick up Snort and Pretty in time.

I went to Wal-Mart first. Since it was still fairly early, I was able to get a handicapped parking spot. Whenever I have Little Guy with me on my own, I use our handicapped sticker because that oxygen tank is HEAVY and bulky. I ran into the store, did my quick shopping, and came out right away.

As I approached my van, an older gentleman sitting in a car parked next to me opened his door and asked me if I needed any help. I get that question a lot, but I think most people are just being polite and are secretly hoping I don't really need any help. I noted that he smelled like an entire liquor store, and smiled at him and said, "Thank you for your offer. I've gotten pretty used to doing this." and continued my business.

The next thing I knew, the gentleman was out of his car. "I just can't sit by and watch a lady do all that work while I do nothing.", he said. And without another word, he unloaded my cart, lifted Little Guy's oxygen tank out of the cart, and then took my buggy and put it away so I wouldn't have to leave Little Guy to do it. I realized at that moment that my judgement of him as a man who just stunk of booze who couldn't really help me was as far from the truth as could possibly be. This was a good man who sincerely wanted to help.

That afternoon, I went to Sam's for the cake. Not one handicapped spot was available. Great! Just what I needed. I took the closest spot I could find and lugged Little Guy and the oxygen with me until I could find a spare shopping cart in the parking lot. I ran into the store, got the cake and some snacks for the Beast's little party, and hurried back to the van. I was going quickly because I still had to get Snort and Pretty and make it back in time for Number One and the Beast to get off the bus. I was going really fast.

Because I wasn't in a handicapped spot, the parking space was a little bit narrower than what I usually had. I had to put Little Guy's tank partly into the vacant spot next to my van so I could unload him, put his carseat back in safely, and then set up the tubing so he wouldn't choke himself. It isn't a lot to do, but even when I'm going my fastest it takes a minute or two. As I was standing there, a woman who looked to be just slightly older than me pulled into the spot where Little Guy's tank was. She looked at me as if to say "Hey! Move that thing. I want this spot." I moved the tank over a bit, but it was still slightly in her desired spot. (Not that there weren't 300 other spots to choose. She just wanted this one because it was 5 feet closer than the next available one.) What did she do? She pulled her car right up to his tank and parked it there! She got out of her car, tried to be kind, and said "Good thing I have a small car. I don't even need the whole spot." And she walked off. I stood there stunned.

I had misjudged the poor man that morning who genuinely wanted to help as someone who really wouldn't want to be bothered. And, I had summed this lady up as "another mom", someone who would understand what I was trying to do and be patient. I couldn't have been more wrong in either case.

I am amazed every day about the things I learn about other people as I go about my life as a mom with special needs children.

Thursday, September 3, 2009

Sometimes Lung Disease Just Plain Sucks Rocks

Snort has asthma. He developed it because he had severe reflux with aspiration as a baby. His asthma has been really hard to control for the past week and a half or so, but we were dealing with it. Little Guy has also had his own fair share of problems. Over the past couple of days, his breathing has gotten more labored and he's developed a horrible cough much like Snort's.

Since Snort had an appt. with his pulmonologist today, I brought Little Guy with me. Snort still sounds yucky on the inside, but is at least no longer coughing until he vomits. That is a big accomplishment even though we know we still have a long way to go. And then there's Little Guy. He's wheezing, dropping sats a little, and just generally miserable. After a long deliberation, the determination is that he has developed some reactive airway issues which will likely be asthma on top of his NEHI. Poor little guy.

We spent about six hours with the pedi, Snort's pulmonologist, and a phone consultation with Little Guy's pulmonologist. In the end, we got to come home instead of going to the hospital, but we've got a suctioning machine, tons of breathing treatments, and three weeks' worth of antibiotics. *sigh* But, at least we're home. If he gets a fever, struggles any further with breathing, or anything else, they'll admit him for IV antibiotics. Poor Little Guy. I figure God must have big plans for him later to make him into such a strong guy now.

In other news, I have finally found a way to prevent him from getting tangled in his tubing! Hooray for that!!! I got 42 feet worth of that tubing stuff that comes with nebulizers that is kind of crinkley (if that makes an ounce of sense!). It only cost $1.87 and is working like a charm. He still gets wound up in it, but he's safe from being strangled.

Tomorrow, he'll go see Dr. Michele to get new impressions made for earmolds. He can't wear his hearing aids at the moment because they also found a yucky ear infection today.

On the upside, the Beast has come home with good reports every single day this week. Tomorrow he gets to bring birthday cupcakes to school. He's SO excited about it!