Carrots as rockets

I'd shared my feeding therapy frustrations many times with Isaac's therapists, and then finally, we dropped out of the second feeding therapy approach we'd tried...and failed. Well, maybe not exactly failed. For awhile we would have been given a D...maybe a C-. Many months ago, Isaac's Occupational Therapist told me that she was going to attend a conference on an approach to feeding therapy that she thought would be a good fit for Isaac. I was all for it, and looked forward to hearing what she thought after she attended the conference.

Heather (his OT) returned from the conference full of excitement. She planned to start as soon as possible, but she warned me that we would have to do some weird stuff. Uh, okay, I guess I'm up for anything, I just want the kid to eat one day...or at the very least, touch food. She told me that once we reached a certain point of success during the program, we would have to put food in our mouth, chew it up, and spit it out, so that he could visualize what chewing does, or that food is safe to eat, or something like that. And then she told me that you begin with green and orange foods, which meant, broccoli. Oh man, Heather, I really don't like broccoli. She said we could use asparagus instead. For whatever reason, we've been using green apples, so I'm cool with that.

You have to know something about me. I don't like messy eating. Can't stand it. It disgusts me. I'm okay with Isaac being messy. He can smear food, throw food, smash food, I really don't care, whatever gets him to touch it and eventually, eat it. But as for me, I'm the person who cuts up my slice of pizza into small bites so that I don't risk something getting on my face. I would never eat a cone of ice-cream, bowl and spoon for me. Messy appetizers that are not offered without a plate and fork--forget it. The only people I am truly comfortable eating in front of, is my family. Obviously, Isaac isn't the only one who has problems. I'm just going to admit here, that I have been in therapy for my own problems, including but not limited to my issue with eating in front of people. Either way, therapy is awesome, and I firmly believe everyone (probably some people more than others) should have a good therapist, so go out and support the mental health professionals!

Well, obviously the idea of spitting out food onto my hand, had me concerned. But I knew it would just be Heather, Shelly (Isaac's speech therapist), Isaac and me, sitting at the table, so I was sure I could be brave enough. We've had four feeding therapy sessions so far, and Heather is super outgoing, and full of energy, and silly...basically, everything I'm not, so if she's cool with looking ridiculous, I try to spend those forty-five minutes being okay with looking ridiculous. Isaac was being very brave this week. During most of the session he stares at Heather like she is completely insane, but this week, he actually touched the carrot and the cheese to his face--huge step for him. How did we get him to do this? Obviously, we pretended the carrot was a train and chugged up our arm, which was the mountain, to the top of our head, the peak of the mountain, and then back down the other side. Then, Isaac shocked us by putting the carrot to his face, so obviously the carrot had to be a rocket that shot out of our mouth, so that just maybe, Isaac would be cool with putting something, anything, aside that infant, hospital issued pacifier, in his mouth. I shot a carrot out of my mouth like it was rocket. Isaac thought it was hilarious, and we all laughed. And I was brave, just for him, because I want my kid to eat.

Exercising with a five year old.

First of all, exercising with a five year old is definitely not a good idea. I've been trying to figure out how to exercise during the day, so that I have don't have to do it at nine o'clock each night when I'm already exhausted. Since Isaac cries when I pee, it seemed a far fetched plan that he would contentedly play while I spent an hour exercising. Well, as it turns out, he wasn't the problem. My little sports commentator was, and I heard each of these phrases, at least two times: 

She's better than you.

Why aren't you doing it. 

Look, I'm doing it better than you. 

She has her leg up higher. 

Why are just laying there. 

I'm hungry. 

Why can't I have the weights? 

I really wanted the weights!

I'm starving. 

She's doing it way faster. 

I'm sooo hungry. I'm starving. I need something to eat right now!

You need to do it faster, like her. 

Are you done yet? 

When can I eat? 

I'm seriously considering re-joining the gym. 

Isaac thought it was hilarious that he could put his pacifier on this toy and then put it in his mouth.

We are also working very hard at getting him to agreeably sit with us for dinner, and have a tube feeding at the same time (that's the tricky part). The last two nights it has worked perfectly. In his mind, tube feeding + high chair = DVD player, or else I'll scream forever. So we are very grateful for a couple peaceful meals.

If I'd kept track of the hours Isabella spent cleaning the chalk board over the past few days, you would assume I was running a child labor camp. It's clean. And I never asked her to do it. Obviously. If I'd ask she would have thought I was torturing her.

Isaac's Occupational Therapist is amazing. First of all, she's the polar opposite of me. This means that she is always super peppy and when she sees Isaac she says, "HIIIGH FRIEND!" in a really loud high pitched voice, and has so much energy, that I wish I could bring her home with me. She dressed up as a ladybug on Halloween, which totally freaked Isaac out, but he got over it and agreed to work with her that day. I reserve my high pitched happy voice for Stella and our nighttime cuddle, which always make Walter roll his eyes. It goes something like this: Well there's my puppy daaawwg. Oh what a cute Stella Bella. You're my poopsie poopsie puppy do...okay, that's probably enough. Please don't stop reading my blog now. It's our moment, okay?

She tried to get Isaac to pretend he was eating the rice. He gave her an intense look of disgust and refused to touch the spoon.

Another mom at OT was commenting on how angelic Isaac always looks..."does he ever scream?" Does he ever! The kid has lungs of steel. Don't let his blonde curly hair and big blue eyes fool you! Just hang out at my house for a day and a night.

Isaac has started using a few new signs lately: outside, like, stuck, train (correctly, instead of his own variation), sit (which has only increased his bossiness), diaper, out, open, shoes, socks. He is always saying some new sounds, and makes verbal approximations to the words: Woody (essential), help, house, home, Mario (another important one), Wii (can you tell what he likes yet?), Luigi (yep), Isabella (ba), Oma, Opa, Papa, and I'm sure a few others.

In OT he is working on some fine motor skills such as, zipping a jacket (we practiced about thirty times during ballet today, so he's pretty good at that one now), and also everyday tasks like helping to put his pants on (now if I can get him to stand, and ask him to show me a leg, he will help put his leg in his pants), taking on and off socks and shoes (which we're actually going to stop working on since he is getting his braces next week, and he will have to work up to wearing those all day), recognizing that he needs a diaper change, telling us what he wants without throwing a tantrum, touching food, transitioning from playing with one toy to playing with another (agreeably), and about a million other things. We're a very long way from these everyday tasks, but he is making progress in baby steps, and we'll take it!

My lesson learned for the day: don't put hummus in Isaac's blend. He's been smelling like garlic for several hours. I like garlic, but when it's burped up...totally gross. I hope you enjoyed that little tidbit of information.

Goodbye!

My response to an article...

I read this blog. And I've definitely gone through stages where I couldn't read it, because Kelle is just too darn happy about everything. And she makes a life where special needs is involved seem perfect, and beautiful, and full of harmony. Well, I'm not here to crash the party, or at least I don't want to, but darn it, when the only way your child is fed, is through a tube, and due to your own forgetfulness you don't clamp the little white clamp on the extension set, and then while they're sleeping in the car, the tube pops open, and they puke out God only knows how many precious ounces of fats and calories, that's when special needs really blows. 

I read this article earlier this week when Kelle posted it for Down Syndrome Awareness Month. I left the article feeling a variety of emotions. The first one was anger, because for us and for most of the people I know in the special needs community, we/they do not have in-home therapy services. That would cost a fortune. Sure, that would be fabulous. To not have to worry about child-care for Isabella, packing up the feeding pump and supplies, diapers, spare clothing in case the contents of ones stomach empty by accident, and snacks, there must be snacks because obviously, Isabella will be starving the minute we arrive anywhere. Yeah, I think I could easily get used to therapy in my home. I'd even vacuum a little bit more so that they wouldn't leave my house with a good helping of Stella. 

As stated in the article: 

"Mothering a child with special needs? Well, that's the easiest part. Yes, there are challenges—because life is hard—but we are equipped to deal with them. Loving your child—regardless of how many chromosomes he or she might have or how many times you worry about the future or when and how she learns to read—it's like breathing. It's what you do, without even thinking. You love your child. You believe in your child. You fight to make the world a better place for your child. And that? That never changes."

I completely agree, I do feel equipped to deal with whatever challenges are ahead of us. And one of the only reasons I feel that way is because of the love I have for Isaac, and the amazing bond the two of us have with each other. The other reason, is my faith. Some people don't believe that God still performs miracles, but I believe that Isaac proves that miracles still happen. I would do anything for Isaac (and Isabella). I will fight for him to end. I do not believe that anyone is fit to fill my shoes (except maybe my mom, because she doesn't put up with any crap, and I've learned most of my survival skills from her). 

The only problem becomes the mothering part. Like my friend told her daughter's psychologist (sorry Laurie, I'm going to steal your words), "you don't want to be in this club". Sure, a new world is opened up to us. One that we didn't fully understand until Isaac came along, but the truth of the matter is, I'm no longer just a mom. I'm a physical therapist, an occupational therapist, a speech therapist, a feeding therapist, a nutritionist, a maker of blended meals, a care-taker of a g-tube, and then, on top of all of that, I have to try to feel normal, and remember to just be a mom. So no, in my opinion, mothering is not the easy part. Loving, yes, that's the easy part. Mothering a child who is par for the course, that's easy. And I didn't realize that with Isabella. At the time, I didn't realize that when we played with the shape sorter and she knew her shapes and colors in no time at all, that it would ever require more work than that. I took for granted that she stood up and walked, fell down, stood up again, fell down, and did it all over again, and within a few weeks was walking. Oh, and the feeding, wow was I naive. 

I love my children without thinking--that's a given. But caring for Isaac without thinking? Nope. Trying to figure out our next steps to take with him, following through on his goals, setting the stage for progress and success, planning out appointments, following up with all of the right doctors, that all takes a lot of thinking. And often, all of that thinking is really annoying and takes away from mothering. 

I agree with Kelle, I too have changed since Isaac's birth. I too am stronger, and have learned things that I never thought I would learn. And that is the truly wonderful part of this journey. But there are so many layers to this onion. There are the layers of grief, and acceptance, and the affect on your marriage, and "typical" siblings, and the list goes on and on. Some day, I want to share all of those layers. Not only for me, but for people who are becoming more aware of children and adults with special needs, and also for the people who are "in this club" and quite possibly need someone to relate to. 

Oh, and for the record, the designer of Britax car seats must have had issues with his parents, and decided to take out those issues on any parent who ever had to take apart the car seat to wash it. 

Can you tell that Isabella loves when I take her picture? 

Evelyn...

This picture has "I'm five, and I have an attitude" all over it. 

I can officially say that Isaac is walking, more than he is scooting. It's awesome!

He thinks he's pretty funny. Oh, and he picked out the robot shirt and insisted that he wear it.

He kind of walks like a chicken, and it's super cute.

Socially, we've seen some really big improvements. That's Milo, with the overalls on. He's also Isaac's greatest enemy, except, Milo doesn't realize that, so the fact that they are standing at the same table and Isaac isn't screaming or pushing him, is huge.

Wash. Rinse. Repeat.

I desperately wish that I could turn off my mind. I really think that God should have given us each a little switch. Too bad He didn't consult me on that.

I realize it has been almost two weeks since my last post. I wish I could say we've been having fun. But, we haven't. Isaac is so cute when he falls asleep at night. He pulls the covers up to his little chin, and tucks himself in, then wiggles with happiness and looks at me with a big smile. And then, in the blink of an eye, we've slept very little, it's approximately six o'clock a.m. and Isaac is in yet another bad mood. Wash. Rinse. Repeat. That's what my life feels like--except it has nothing to do with washing hair.

People have been asking me repeatedly (see, there's a theme to this post), "why is he crying?", "what's wrong with him", "is he tired....hungry....hurt somewhere--ANYWHERE"...WELL HOW THE BLEEPETY BLEEP, BLEEP DO I KNOW?!

Oh, by the way, if you haven't already caught on, this is an angry post.

Please stop asking me what's wrong with my child. I have no idea. He has about ten doctors, they have no idea. He has four therapists, they have no idea. Maybe one day, when he can actually talk, he'll tell us.

A few nights ago, I asked Walter, if he could wish for one thing, what would it be. He thought about, and came back with some deep, thoughtful response. Mine wasn't deep. In fact, it was quite shallow. I didn't say that I would wish for Isaac to be normal, that I wish he could walk, or talk, or run, or even eat, I just wish he would spend more hours out of each day, happier than unhappy. That's all I wish for.

For all of the readers who need something happy to read, today officially began our journey of homeschooling. That's kind of a lie because we've been working on math since June, but today, we added the rest of the subjects to our schedule. Isabella's phonics lesson was on the letter 'M' and she was supposed to think of an object beginning with the letter 'M', and draw a picture of it:

"What can you think of that starts with the letter 'M' that you want to draw a picture of?"
"Hmmm...I know! A mammal!"

A mammal. Not a mouse, or a muffin, a monster, or hellooo, mommy....a mammal. She's funny.

Some Isabella quotes:

Mommy, Isaac is just like Hello Kitty, he's cute, soft, and cuddly. And mommy, you're just like Barbie, because you're beautiful. 
     -Thankfully, I'm not "just like Barbie" or I'd fall on my face.

I just love, love, LOVE the letter 'P'! 

It's just too much work for me (to do her math work sheet), and then, I feel in my heart, that I want to play with my mp3 player (that Walter found while cleaning some stuff in the basement).

Mommy, why do you have an attitude? You are having the same attitude as daddy about me going to bed.

"No, I don't want to read that story tonight!"
"Why?"
"I don't like that story."
"Since when?"
"Since twenty years ago."

To a stranger: Um, Isaac doesn't actually like when people touch him. It makes him grumpy. 

At a very stressful feeding therapy appointment: I think he just wants you to give him the toy. 
     -Yep

You didn't give me any green paint, so perhaps you could get some for me. 
     -Perhaps.

And the finale, because I couldn't help it, and I really need things to laugh about these days: 

Daddy, that bug probably fell down into the basement just like the spider that was in my room did, and now they're probably making love.

Goodnight. 

Definite Dysfunction

I was given the write-up from Isaac's OT Evaluation and it sat in my car for a few days, because that's what happens to things that enter my car, they get sucked in and forgotten about. Don't worry, I bring my kids in the house. Last night, after I sifted through some junk, I found the paperwork, along with the information for the parenting class that I'm supposed to "strongly consider" in order to deal with Isaac's behaviors. From a sensory perspective, Isaac is considered "typical" in a couples areas, has "some problems" in a couple other areas, and "DEFINITE DYSFUNCTION" in a few other areas.

I've read a fair amount over the past year about sensory-processing disorders, and guess what? Me, myself, and I, experience definite dysfunction in the area of auditory processing. I'm being a tad facetious here, but to be completely honest, when Walter chews gum, or picks up one of those mints upon leaving a restaurant and I hear his teeth crushing it up on the way home, I want to scream. In an effort to help him become more empathetic toward my dysfunction, I told him a few weeks ago that when he does things like that, eats hard candies, chews gum, makes any sound repeatedly, it feels like tiny worms are crawling across my brain.

I thought that impressing upon him the idea of worms in my brain would make him think twice about that mint--it didn't. My family feels bad for Walter because I make him watch TV at lowest possible volume setting, but I think everyone should try to imagine worms on their brain, and then maybe they would understand.

Don't worry, Isaac. I get it. Maybe when people talk to you, look at you, or God forbid, touch you, maybe then you feel the worms too.

Four days, five appointments...

The only way to summarize last week, is to list Isaac's appointment schedule. Thankfully, not all weeks are like this last one:

Monday: Swallow Study. I was dreading this and assumed it would be horrible for all parties involved. I admit, I'm generally a pessimist, although, Sarah is such an optimist, and I spend so much time with her that she has thankfully rubbed off some of that positivity on to me over the past few years. Anyway...radiology was insistent that Isaac wear a hospital tag. He can't stand those things. Just looking at one makes him mad. I didn't know he'd have to wear one, so I didn't bring a sock to cover it up, and they didn't have hospital socks in radiology and they weren't willing to locate one, so after we left the main desk I pulled it off of his ankle and he was happy. I brought the DVD player, but the battery ran out right before the study was about to start (go me!). We charged it for a few minutes, and it lasted long enough to get a few swallows from the syringe. Isaac loved the barium and defied all of my expectations. Oh, do you want to know what is completely absurd? They told me to bring him hungry. What kind of idiots are in charge of these tests? I mean, really, if the kid was stranded in the desert for days without food or water, I'm 99% sure he wouldn't voluntarily take a drink. I swear, if one of those morons could live with me a for a few days, they wouldn't tell me to bring my orally averse child, hungry.

He passed the swallow study...just like I told everyone he would. My goal is spend the next year weaning off of the feeding tube.

Tuesday: Dentist, for follow-up and cleaning. I really like Isaac's dentist. This appointment went as well as it could. Still nothing to do about his palate until he's six or seven.

Wednesday: GI Appointment. We've wanted Isaac's button changed for the last couple months and were finally able to get it done. As you can imagine, Isaac didn't like having his tube ripped from his stomach only to have a new one quickly shoved back in. Dr. Mahajan was amazed by how well Isaac looks, and asked, "what's your secret?" I told her about his blenderized diet, which she was even more amazed about and said that most parents don't do it because it too hard. Too hard to give your child real food? I get it, formula is easy, convenient (there are still days when he only has formula, due to travel, or when I'm at a wedding because Walter doesn't want to bother with blending food), and you know it will easily go through the pump and then g-tube. But if you really think about, if you consider yourself drinking formula day in and day out, and how that could potentially make you feel, I think you'd opt for real food too. She did check his vitamin levels and ran a full nutrition panel, guess what? Everything was perfect. And now I'm going to pat myself on the back.

Thursday: Mental breakdown, Feeding Therapy, OT Evaluation. So, I was planning to save my mental breakdown for Friday, once all of this madness was over. The entire week I felt like I was hanging on by a thread and constantly on the verge of tears. And then I took Isabella to my parent's house to hang out for the day so that she didn't have to go to two appointments in one day. I saw my mom, and you know how some times, when you see your mom, you can't keep all that you've been trying to keep in, in? Yeah, I lost it. My mom told me to leave the kids and go somewhere until we needed to leave for Isaac's appointment. I sat in a parking lot and cried. Pulled it together, picked up Isaac, and headed to feeding therapy. By the grace of God, he ate from a spoon. That was my gift for the day, and thankfully, I was given that gift because Isaac decided to let his true colors show for the OT Eval. It went something like this:

"Isaac, let's stack a tower! Can you take a turn after I take a turn?"
Isaac sat and stared with his angry eyes, pulling his hair, whipped out his foot and knocked over the tower.
"You're being silly. Let's build a tower!"
Angry eyes, avoiding eye contact aside from an occasional mean side glance. Kicked over tower, and scooted screaming to a different toy to bang his head on it. 
"Look Isaac! I'm going to make a picture, can you make lines like I make lines?"
Angry eyes, pulling hair, grabbed marker and threw it across the room.
Then he was supposed to make horizontal lines...he grabbed the marker, stabbed the paper a few times, then threw it.

So, after an hour we called it quits. At that point he was sitting in a corner pulling his hair, and staring at the floor. She suggested I attend a parenting class to deal with his behavior, and also recommended OT, weekly.

Well, we survived the week. We're all in one piece, though a bit mentally unstable over here.

Next time, pictures of Isaac walking!

a dream

I've always had incredibly vivid dreams. At times, this is considered a blessing, or a curse. While in high school, I experienced the same dream scenario over and over again for an entire year, until finally, it went away. Everyone I shared it with, thought I was crazy.

Last night, I dreamt that I was eating a piece of bread, and Isaac walked over to me and took one bite after another, and ate the rest of my bread.

I've been up late the past few nights researching feeding therapy techniques. Somehow our feeding therapy has turned into speech therapy, and that annoys the crap out of me. Supposedly, the SLP we've been seeing for almost a year, is one of the best. At the moment, I'm failing to see what we've accomplished in this last year (in terms of feeding). In my dreariest moment, I'd say we've gone backwards. Lovely, right?

His speech has improved. Or more specifically, his attempt to make sounds. His SLP tells me I should make a list of all of the words he says, so that I can feel good about his progress. I should do that, but it's hard when, uh, ah, e, ay, duh make up a majority of his words and each of those sounds means something different according to context. He does say, bebe (baby), ball, mama, da, and a few others that you would probably be able to understand.

He may have dysphasia; he may have apraxia. It's all too soon to tell. Basically, what I was told a couple weeks ago, is that he will probably be able to say words, but the more complex your thoughts become, the harder it is to clearly share those thoughts, and that will probably be Isaac's case.

Do you know how many technicalities there are to forming sounds and eating? I bet you don't.

Isaac is supposed to sign something or make a sound related to the item he wants. Walter got mad at me this morning for holding out on Isaac before rewarding him with the toy he wanted. "Can't you just give it to him?" he said. I can. But what good will that do in the long run.

Sometimes I want to throw in the towel. I want to just stick food in an IV bag for the rest of his life. Sometimes I don't want to make him work for anything because all of that work means that I have to sit through an hour of speech therapy each week while he goes from angry-eyed-passivity to full blown anger that he actually has to do something; to make one seemingly simple sound before he gets the toy car.

The Occupational Therapist who completed Isaac's evaluation a few weeks ago shared two scenarios, one in which a young boy with Down Syndrome was handed everything he ever wanted, and never had to work to attain a goal, and is now a very unhappy adult. And another boy with Down Syndrome, was forced to work for that stupid toy, and had to say, /b/ for boy, and now he is a happy adult, and is able to hold a simple job.

I guess we'll keep plugging onward.