Wednesday, February 29, 2012

he cried, i laughed

You remember that one time Punkin streamlined vomit into my eyeball? No? You have your own life, you say. Well, it happened AGAIN on Friday in an eerily similar situation. I was called during work; Punkin had vomited but otherwise seemed fine. His doctor and I had been discussing his reflux medications for a while and trying, still in vain, to get him back on the Prevacid Solutabs he was originally prescribed but for which Medicaid no longer wishes to pay.

Anyway, I took him home, called the doctor, and tried to discern whether Punkin was actually sick or not. The doctor decided that no, he was not ill, he just needed a new medication and a more restricted diet (boo). So I buckled him into his seat and the usual hacking cough and tug at the throat began; usually I can say, "Punkin, stop" and it will in fact stop him.

He projectile vomited all over the back of the car. I grabbed a towel and managed to catch the second wave, and even the third, but not before a dagger of hot puke pierced my right eyeball. HOW DOES THIS HAPPEN TWICE?

We drove home, which is about 20 minutes, both completely disgusted. He cried, I laughed. He proceeded to throw up on the couch and both of our beds, but had no other symptoms.

Now he's taking omeprazole capsules, which have to be opened and sprinkled over applesauce. I almost got applesauce in the eye the first time I gave it to him. But with the promise of SKITTLES!, he eats it. Oh the joys of parenting. 

Tuesday, February 28, 2012

baby steps

So the weekly calendar is working nicely, but the nightly schedule may take some time. He complies with all of the steps, but then when I'm not looking he does this. How do you sleep with a backpack on? Poor kid. We missed the bus Monday, and today and tomorrow he has to stay home because of fifths disease. That's three days of no bus, people!

Monday, February 27, 2012

i ride a bus in a morning?

My son thrives on routine and consistency, a fact which doesn't surprise anyone with a child who has special needs. He also really loves riding the bus. So much so, in fact, that he will dress himself in jeans, a shirt, socks and shoes, coat, hat, backpack, and harness (with my help) for bed so that he's ready the next morning. Now, this wasn't a big deal for a long time; he wore his shoes to bed once in a while (I could talk him out of the rest of the items) and it looked odd but never caused a problem. Lately, though, he won't let himself fall asleep because he's so concerned about the bus. One night he was awake, sobbing, until midnight. This is a problem. A big problem. For me.

So I e-mailed his speech pathologist and begged help, and she rallied to the cause in a big way. Here's what we came up with:

I still need to add the names and/or pictures of his respite workers and his occupational therapist to the appropriate days, but so far he has really taken to it. I think I'll cross off each day with a dry erase marker so that he can clearly see what's happening next. It's all attached using velcro so that I can change it easily as needed.

Friday, February 24, 2012

a little bit of God talk

The church I attend has a special Lenten devotional series each year. This year they asked members of the school's faculty to help write it. My mother passed her assignment off on me, and this is what I wrote. I wanted to share it on my blog because I often think about how my focus has shifted over the past seven years of Punkin's life, how simply knowing him has shaped me into a more joyful person. I was asked to base this devotion on Mark 7: 31-37. In this reading, a man who is deaf and mostly mute is brought by his friends to Jesus for healing. Jesus heals him, but tells the men not to talk about it to anyone. They are unable to keep the secret and soon everyone is talking about the miraculous healing.


When I think about the healing of the deaf and mute man, I cannot help but think of my own son, who has Fragile X Syndrome, which includes a diagnosis of mental impairment, ADHD, sensory processing disorder, autistic behaviors, and speech delay. Unlike most children, he can’t answer my questions or relate his feelings and experiences with any amount of accuracy.

When he was much younger, I thought about him being cured in the same way as the deaf man. What would that be like – to engage in a conversation with a person who just a few minutes ago struggled to find a single word? I can’t imagine it, and I can’t imagine being quiet about it, either. I’m pretty sure I wouldn’t be running the halls of the mall shouting, “IT’S A MIRACLE,” but I would definitely tell everyone who gave me five minutes of their time. It’s obvious why the men in the story did the same; it’s easy to understand their joy.

What isn’t easy, though, is understanding our own struggles. We want God to swoop in and perform a miracle; we want Him to heal our pain, relieve our burden. The truth is, though, that He has a different plan for us sometimes. We may not receive a miraculous healing, at least not the way we desire.

Now when I think about my son’s future, I don’t pray for a cure; I just pray for God to continue to bless us. You see, sometimes a commitment to God means accepting His challenges and allowing Him to lead you to a point where you see your burdens as miracles, your pain as opportunities for praise.

Having a child with a disability has taught me to appreciate each developmental milestone; when it takes your child until age five to use a crayon, coloring becomes a miracle. God has also, through my son, taught me patience and a new level of compassion.  When we are at our lowest, we can lean on our Savior and see how He continues to provide. People tell me all the time, “I don’t know how you do it.” Here’s a confession: I don’t. God does.

Wednesday, February 15, 2012

i try now?

We got a treadmill. So that's been exciting. Little Man learned the hard way not to jump on the back while mom is using it. Nobody was injured, just shaken and stirred.

Wednesday, February 8, 2012

making friends

This is a post I wrote for Pre K and K Sharing. As always, you should head over there!

As parents, we all want to see our children make friends. When we discover our children aren't typical, we start focusing on therapies, school, and even just surviving the day. But at some point, we sit and watch our precious child shake two wooden spoons in front of his face for twenty minutes and wonder if there's another child in the world who would understand this behavior. And then you eventually meet another parent of a special needs child and find your answer -- yes, someone does understand! Unfortunately, many of those people exist in a land called The Blogosphere; it is likely you will never step foot in each others' homes.

And even if they did live next door, one reality would still have to be faced -- the world isn't filled with people who are exactly like yourself. It's filled mostly with neurologically and otherwise typical individuals who don't get it when a seven year old slaps his mother across the face when she asks if his head hurts or when a little boy at a play group melts down because the lights are too bright and starts throwing toys like snowballs.

It's tough being the parent who's constantly running interference, whether it's because of behavior difficulties, language boundaries, or navigating basic social interactions. It's a constant game of interpreting, prompting, and redirecting, but we do it because we hope for a connection.

I recently read a status update from a fellow parent of a child with fragile x syndrome. She relayed her heartache over a conversation with some children in her child's daycare who said they didn't like her child because they think her child is mean.  I've been there, and it hurts. "He's weird." "He's mean." "He acts funny." "Why does he do that all the time?" "I don't like him."

As parents it is our job to advocate for our children, to be the ones running interference during play dates. As educators, it's our job to foster an environment that feels safe and loving. It's our job to listen for the cues that a child is at risk for alienation and try to stop it; it's our job to teach tolerance

It begins with our own attitudes, with the verbal and non-verbal language we use while talking to and about challenging children. I'm guilty of the eye roll, too, I am. I'm guilty of walking in and thinking, "I can NOT do this another day" and letting it affect my approach to the class. We've all been there, and we can all probably do better.

What I suggested to this parent was that she sit down with the teacher and let her know about this conversation and her concern over her child's acceptance. And then I would expect the teacher to do something about it, even if that meant having a talk with the entire class. Here's what have said in response to preschoolers questioning me about my son: You know how you're super smart? Well, he's smart, too, but it takes him longer to learn new things. He has trouble using his words and making friends. But you can be a good friend to him and a helper to me by showing him how to make good choices.

I've also fielded a lot of questions about sensory integration techniques such as therapeutic brushing. The easiest way to answer, "Why does he do that?" is to simply say, "It helps him to feel better. It helps his body feel calm."

When we make a point to include each student by giving them all a space to sit, acknowledgment of their feelings, and a purpose in the class, it helps reinforce the idea that each person is valuable -- that you, the teacher, likes each one of them. Now, as for what I will do when he's in high school, I don't know. Hopefully he will be among classmates who have been a part of an inclusive classroom.

Saturday, February 4, 2012

not ripping paper

"Is a snowman!"

Something is clicking in my son's brain, and I think it's awesome. We were at the doctor's office talking about that lingering cough again, and instead of ripping the paper he played.  The vomiting has stopped, but the coughing hasn't. I really, really didn't want to take him to the doctor that day because I was on the tail end of the flu, but I rallied and made it in. His doctor said the only way to test him for asthma is to give him steroids for a few days to see if he gets better. If he does, it's asthma-related. If he doesn't, it's something else. I'm sure I'll have lots of fun status updates about liquid steroid medication and how easy it is to convince Punkin to take it.