Swim With a Stud-Muffin

Living from the Heart is offering an amazing dolphin retreat in Sept.

 

 

 

 

 

 

 

 

 

This is Seth with Amizcle, (Uh-MEEZ-clay) the enormous 600 lb playful loving dolphin stud-muffin (he’s got like 18 kids). He is the guy we spent most of our time with when we made the trip to Mexico in November.

If you have a child with special needs, they will be 100% accommodated and no one bats an eye at any behaviors. If you have only typicals, they will have a blast. All are welcome.

If you’ve always wanted to go to Mexico, or swim with the dolphins this is a great opportunity for a family vacation with lodging and most meals covered in the cost.

$1,888.50 for a family of four.

If a retreat is not in the cards for you this year, perhaps enjoy living vicariously by reading Macy’s blog and watching the videos of the dolphins on her site. It is so relaxing to do so. File Cozumel in your dreams and perhaps one day, maybe sooner than you think, you’ll be experiencing Amizcle’s magic for yourself. You never know.

 

 

 

 

 

 

 

 

 

I’ll never get over Riley riding a dolphin across that pool. She started showering on her own after we got home from the trip. No longer afraid to get her face wet. No longer afraid to let go of me in the water. I know I probably already blogged this but I am still in awe and will never take it for granted. She’s upstairs in the shower right now as I type this. Last year I had to stand there the whole time. Rinse her hair for her. Listen to her cry over it. Flinching the whole time. Now she does it herself. To me, this is a miracle. This is a load off. This is a step toward living independently one day. I really adore Macy who runs the program and can’t say enough good about it. So pardon me if I repeat myself like an old grandmother who doesn’t remember what she told you yesterday(I truly often don’t remember what I wrote yesterday). Indulge me, while I sit here typing, drinking my tea, not rinsing my child’s hair.

 

 

 

 

 

 

 

 

 

I really hope to tell as many people as possible about Living from the Heart.

Did I mention since we got back, when I tuck Seth in at night I pretend to give him sonar? I put my lips to his forehead and make dolphin sonar noises. He pretends to only tolerate it, but secretly he loves it. I know he does.

A Camper’s Dream

This will be Riley’s fourth year of music camp. From her first summer there she’s had her eyes on the prize. She wants to be a camp counselor.  One of her music therapists heard of this dream a couple of years ago and encouraged her. Why not? It was a long way off. Her view was why put limits on her? Another music therapist she had very early on heard about it and was like, “hell no.” I mean, she didn’t come out and say that, but she was skeptical. She’d had Riley when she was still a screaming mimi. She didn’t want to encourage this. I backed off and let it go for a while, but Riley never did. She wants to be a counselor.

The music therapist who was championing her found a new job.

The organization that runs the camp got a new director last year.

I popped in to talk with the director today. I needed to know how realistic our chances are. Riley talks about being a counselor, a lot.

The director told me she was so moved watching Riley as the lead last year in the musical production.  They had just two weeks to put together the play and they needed someone with a good memory to learn the lines. Riley did it, and she was great. She said she’s had her eye on Riley, and she’s one of the most empathetic campers they have.  This is an inclusion camp, mostly typicals, and several kids with special needs. She told me not to do anything to discourage her dream. She told me Riley has touched her heart. She told me she prays for my little girl. She told me, “She’s going to be alright.”

She flat out made me cry.

We’re going to work together and figure something out. It’s still a couple of years away before she can even be a counselor-in-training. Maybe she can be a helper or an assistant before she is a counselor-in-training. Ease her in a bit. Maybe we have an aide unobtrusively shadow her when she’s a counselor, just in case she needs help.

I know Riley can do it.

I love that she wants to do it.

I love that there are people who care about her and want to support her in her dream.

I love my girl.

*Riley in the role of “the teacher” in last year’s summer camp production. Camp starts in less than three weeks.

Finding my way on the deck

Right this moment, I am fine. I keep telling myself that.

Today was a rough day. I have been slaving in my too small kitchen for a month, making every morsel for my family from scratch. It’s been hot. We have no A/C.

Riley has a hard time getting dressed. She gets distracted by the cat, and by toys in her room. She freezes deciding which outfit to wear. There’s face washing and hair brushing and finding the right barrette. She doesn’t want help. She doesn’t want to be treated “like a baby.” But she takes anywhere from 45 minute to two hours to get dressed. And I’ve got places to go. Errands to run. Things to take care of.

I made her a hot lunch today, only to watch it congeal as she took forever, once again, not dressed by noon. I could feel myself getting so pissed as I marched upstairs toward her room. And on the heels of my anger came a voice that said, “Pre-pave. Pre-pave. Pre-pave.” It is an Abraham-Hicks exercise, where you set up your intention before entering any given situation.

I can’t say that I took the time to truly pre-pave. I kept walking toward her room, but the follow-up thought, “think about what you want” came to me as I touched the knob to open her door. It helped.

Gently noting in my mind that I had some control over how this all played out allowed me to be non-reactive even when Riley completely lost her cool with me.

So. A victory.

It’s rare anymore, but it really does shake me up when she has a meltdown. It makes me fear she hasn’t come very far, and maybe it’s just that we ask so little of her. I know it isn’t true, but the fear comes up.

I am tired. I feel like I’ve had my feet tied together trying to run a marathon. I constantly compare myself and come up short against others who do not have the challenges I have. Whose kids do not take two hours and a meltdown to get dressed. Why could I not promote my book more? Why have I not gotten very far on a second one? Why have I barely written at all lately? How did I let my nursing license lapse? Why have I not studied more and re-taken my nursing boards? Why have I not had a true paycheck in ten years? Why do I have 15 pounds to lose? Why is my house always a wreck? Why am I not content?

Should I just be able to find contentment in what I have and what I am doing? Swallow hard and count my blessings? If so, how?  ‘Cause I think I’ve done a lot of “inner work” and I still feel sad and miserable.

Not all the time, no. Tomorrow I will feel much better I am sure. A new day will dawn. I will laugh. I will be grateful for this life.

It’s just, sometimes….it sucks.

I’m out on our back deck now. The trees are lit up from the west, some leaves are bright green, some are shadows. The birds are singing. Our neighbor’s koi pond makes it’s music. It has finally cooled off.

My sweet husband is washing out the garbage can in the back yard. Cleaning up dog poop. Taking care of crap I never have to. Soon he’ll go in and supervise bedtime routine for the kids. He knows when I need to back off and he steps right in. Words aren’t even necessary, but they are welcome. Tears are welcome too. He sent me out to the deck with my computer and a choice of water or wine. I picked water.

The kids are signed up for day camp this summer. And Riley. After two and a half years of homeschool, my Riley will be going to school in the fall. A school for kids with learning differences. She’s so excited.

And praise God from whom all blessings flow, it is a school that requires her to wear a uniform.

Thinking about the uniform, with her typical void of false modestly she beamed and said confidently, “I’m going to look super cute!”

She will. I’m sure of it.

Amen.

Craving

In the kitchen. A lot.

Breakfast today: It was homemade yogurt with fruit. I put honey and vanilla in the yogurt, then some cinnamon, and added frozen fruit to Riley’s, a homemade spice muffin crumbled into Seth’s. He didn’t love it, but he ate it. Most of it.

That’s right. Making my own yogurt. It’s pretty easy actually. Making our own everything. Todd was off for a few days and he really busted his butt in the kitchen, making three different kinds of muffins, and lots of other stuff too. He really appreciates what I do, and that is so vital to being able to pull this specific carb diet off. Support, man. It’s everything.

Seth ate two tablespoons of salad today. Seth has never eaten salad before. He eats broccolli and peas and carrots, but not lettuce. He’s trying a much wider variety of foods lately. He’s starving half the time when he insists on being picky, so then hunger works in my favor at the next meal. I feel for him.

Tonight I am craving my popcorn. I’m craving my ice cream. Luckily I rid our house of these items a couple of weeks ago.

I read somewhere recently (and have no idea where, sorry) that toxins are stored in fat. So when you lose weight, you start to release toxins, so your body craves in an effort to help you. It wants you to not have to deal with all those pesky toxins circulating through and so it sends you to the cupboard or freezer to get you to keep those pounds on. Your craving means well, but it doesn’t really serve you. You’d do much better to drink a lot of water. Maybe take something for liver support.

Tomorrow Riley has another shadow day at the school we looked at for her last month. The one she wound up having a hard time at because she panicked when they gave her a math worksheet. Our girl has been through six schools in her short life. When we first pulled her out it was so overwhelming. By the time we got tutors, I was so burned out and tired. I really didn’t care what they were doing as long as she was safe. I needed the break. I knew she was advanced academically. She needed to coast and so did I.

Lately however, I feel I have my strength back. I’m looking around and knowing she is capable of so much more than we are currently expecting of her. I am not a very structured person, and I think she needs structure. She’s the kind that would loll around in her PJ’s for weeks if I let her. If there is no routine, she is Spacey Stacy. Super smart, super sweet, Spacey Stacy.

What do I really crave?

I crave a learning environment for my daughter that will challenge her and nurture her and help her to achieve her FULL potential. I crave some stability. I want to know she’ll be okay this year, and next year and the year after that, and not subject to the skill or lack of it of any particular teacher. I want her teachers to really see her, and love her. I want love of the child to be a requirment in the job description. I want her teachers to understand fully that she is also their teacher. I want her to just become more and more of who she is. I want her to learn unafraid.

I don’t know what will happen tomorrow. I have given up thinking I know how it is all supposed to unfold.

But I crave.

I do.

The Grump Family

I have been dealing with a very bad cold since Tuesday. The kind that doesn’t allow you to sleep because so much is going in with your throat, ears, nose, sinuses, that kind of thing. Seth had it first, then Riley, then me.

It’s been hard, trying to implement this new way of eating, working like crazy in the kitchen, all while not feeling well, and also dealing with the emotions of my children who are having to get used to new food and let go of some old food favorites.

Plus, let’s not forget I too am detoxing from my sugar addiction, and I am an emotional eater and I can’t turn to the foods I love during this stressful time.

Yesterday, I was a total grouch. My kids were driving me crazy. Seth didn’t like anything I busted my butt to prepare for him. I burned my hand in the kitchen. We were going to a party, and I made sure to bring stuff my family could eat, but the whole thing filled Riley with so much anxiety. Anxiety about feeling “deprived” of what everyone else was having. Anxiety about being different. I was getting sick of hearing about it. On the way there we talked about all the kids she knows and I rattled off all of their food issues (there are plenty) and talked about how it isn’t a big deal and everyone had something they’re dealing with, and it was in one ear and out the other, her anxiety ramping up up up. I wasn’t the most patient. I  wasn’t talking it through, or validating her feelings, I was basically rolling my eyes, telling her “no one cares” if you are different, and “if you keep this up, we’re turning around and going home.”

She navigated the party quite well, with a lot of navigating on my part at the beginning, better after she got food, and with some whining at the end as we were leaving… over a box of canolis that showed up. She’s never had a cannoli, and she certainly felt like she was missing out. I convinced her that cannolis are filled with an almost cottage cheese filling and not even all that yummy. Todd mentioned how disgusting the pastry part is, practically made of lard. And for us, it is true, we’ve never really been cannoli people (Cheesecake? Now you’re talking). She felt a little better. Hey…you do what you gotta do.

We took a moonlit walk last night, after I heard the moon would be the  brightest we’d ever see in our lifetime. It was awesome, sitting there on a park bench, looking up at that beautiful moon with my husband and my sweet little kiddos.

After that, Riley was tired and very whiny getting ready for bed. Suddenly so tired she couldn’t wash her face. She started freaking about the garbage in the bathroom being full. She was teetering. Todd, who had worked at 6AM and then energizer bunnied all day, going to the store after work and then going to the party, well….he yelled at her.

It wasn’t a good loving supportive day for Riley. She is doing so well most of the time, we sometimes forget she still has autism. We forget it’s not as simple as saying, “Don’t worry about it.” If she could “not worry about it,” she certainly would. We never could have just blown off her feelings even a couple of years ago. We’d have had a major meltdown on our hands. Sometimes we forget how hard she is still working.

This morning, I snuck into her room and snuggled into her bed, wrapping my body around hers. She wiggled into me. I held her a while and then said, “Riley, I’m sorry I was so grumpy yesterday.”

Immediately she turned to me with her big beautiful eyes and said,

“I totally forgive you.”

Open


So much has been going on. So much has not been going on. I’m in limbo. Last week Riley went to shadow for a day at a local special needs school. She was so excited. She had no qualms about me leaving her there. She marched confidently into her day. Just a couple of hours in, I got a call. They had given her math work to do, along with the rest of the class. She panicked because it was presented in a way she wasn’t used to. She raised her hand, but the teacher was busy with another student. She wound up crying and running from the room. She managed to finish her day. She felt happy about it. When I picked her up, the principal said she’d be meeting with the teachers about Riley and getting back to me. It’s been over a week. No word. I called Monday, left a message. She has not returned my call.

Seth was supposed to visit a private school this week. He’s been doing quite well with his PANDAS, and hadn’t been sick in months. His tics were becoming less severe. Hardly noticeable if you didn’t know him. On Saturday they flared up again. On Sunday night, he complained of a sore throat. By Monday it was severe. We had to postpone his visit.

It’s a great school, but I’m left wondering if this is the right thing to even consider? Will being in school just keep exposing him to more strep? Will he constantly be sick? Will it be a never ending battle? Is it worth it? Neither kid is entirely thrilled at the possibility of going to school. They are perfectly content being home. It’s me having a hard time with it. But why? Is it really that bad?

I’ve figured some things out over the past few days. I have a friend whom I love dearly, and I’m in daily e-mail contact with her. She runs a thriving business. She can’t imagine doing what I am doing, homeschooling. It is her worst nightmare. So, whenever I have a bad time…I find a great ear in her. I can commiserate and she can be all, “Girl, you have to get out of that house! You have to get their butts in school!” It feels like she actually kind of pities me being at home.

And she means well. And I’m not blaming her. I’ve certainly been asking for it. But it’s not what I need.

When she has bad days or weeks at the office, I never say, “Girl! That job sucks. You should quit immediately. I don’t know how you stand it! Close down the business!”

I tell her, “You are smart. You can do it. You are good at it. You know what you are doing.” Because she is smart. She is good at it. She does know what she’s doing.

I need someone to tell me that. I need to ask for that.

My kids just might be homeschooled for the duration. If that is the case, rather than running to someone to validate why I hate it, (and btw, I only hate some parts of it, just as she only hates some parts of her job) I need a different kind of support.

Homeschooling is such a radical departure from mainstream society. There is little validation for it. Even in the homeschooling community, families are going about it in so many different ways. I never quite feel like I’m doing it right. I always feel lacking. I always feel worried about the future. Their futures.

Settling into bed the other night, I said to Todd, “If I knew we were all going to die in an accident in fifteen years, I wouldn’t change anything about what we’re doing right now.”

He replied, “Unfortunately, we can’t guarantee that.”

And we laughed! 

I hate feeling unsettled. I hate not knowing what is going to happen. It’s so unnerving.

I feel like it’s time to shut out the opinions of everyone else in the world, and listen to my own heart. Trust my own instincts about what’s best for them, and what’s best for me.

Today in the shower I put a hot washcloth over my eyes and pressed down until little sparkles appeared behind my lids. I felt a calm come over me and a sense of gratitude.

Thank You.

Thank You for this.

Thank You for the not knowing.

Thank You for this moment which will lead to the next beautiful part of our lives. It’s okay not to know. It leaves the door wide open to possibilities.

Previewing this post I click to enlarge the photo I chose and notice Seth, our angel baby, ahead of us on the path, both feet off the ground.

The Golden Hat

I simply couldn’t conceive of how devastating it would be not to be able to hear my childrens’ voices. Not to be able to communicate with one’s children, to hear them learn, grow, and express themselves verbally.

– Kate Winslet

 

 

 

 

When Simon & Schuster contacted me to ask if I would review The Golden Hat, I said yes, immediately. The book is Kate Winslet’s baby. The profits will go to support those with autism. I love Kate Winslet. I think she is one of the finest actors of our time. She does not have a child affected with autism, but became close to one while doing the voice over for a documentary called, A Mother’s Courage, aka The Sunshine Boy. As her friendship with Margaret, (the mother of a child with autism and the woman who made the film) progressed, an amazing thing happened. Margaret’s ten year old son Keli, who was non-verbal and profoundly affected by autism began to speak on an augmentative communication device. His first words,

I am real.

He was in there. He was aware. He was listening to everything. A physician had told the family to assume he had the cognition of a toddler. That doctor was dead wrong.

At ten years old, this mother finally “met” her child.

It also turned out that many other things they assumed about Keli were wrong. His preferences, his interests. All wrong. And guess what? He’s a poet. One of his poems is titled The Golden Hat, thus the title of the book and the foundation they have formed to help secure communities for those with autism to live in when they mature into adulthood. Any parent with a child on the spectrum has that nagging fear…what will become of my child after I am gone? The Golden Hat Foundation is working on that.

Kate Winslet schmoozed a whole bunch of celebrities into taking self-portraits with her own fedora in the shot. And that hat got around! Meryl Streep, Julia Roberts, Daniel Radcliff, Angelina Jolie, Julianne Moore, Don Cheadle, Leonardo DiCaprio (of course), Rosie, Christina Aguilera, Matt Damon, George Clooney, Gwenyth Paltrow, Michael Caine, Hugh Jackman….this list is seriously just skimming the surface. There are so many celebrities in this book. She even got Steven Spielberg to take a shot of himself in the hat!  What’s great about the photos is they are not fancied up. They are taken with Kate’s digital camera. Accompanying the photos are quotes from the celebrities. They were asked to think about being trapped inside a body, unable to speak, what would they be wanting to say?

Some of the celebs clearly didn’t understand the assignment, their quotes don’t make sense. A couple didn’t offer a quote (Angelina), but most of them did. Many of the celebs used the hat to hide behind. I thought that was interesting.

When the book came in the mail it felt like a present, which I guess it was. I didn’t have to pay for it. It’s a gorgeous coffee table type book.  I sat out on the deck with a nice glass of lemon water. There was a balmy breeze as it’s been an unseasonably warm March. I let my own kids play on their iPods and spent the afternoon pouring over the stories and the photos and Keli’s poems and I couldn’t help but think of my mama friends whose kids are non-verbal. Betsy, Kathi, Jeneil, Kim, and so many others. All with different takes on autism. All with different ways of coping. All with so much love for their kids.

I closed my eyes and just sat there, holding all parents who are on this road in my heart.

Real familes. Real mothers. Real children, just like Keli.

They are real. 

I am Intelligent from Amothers courage on Vimeo.


*Proceeds from the book support The Golden Hat Foundation. I was not paid to write this review but as noted in my post, I did receive a free copy of the book.

Together, 24/7

What is something in your life that you have an attachment to that is somewhat limiting your vitality?

This was our question to ponder at last night’s 40 Days weekly meeting.

Mine is that I am the only person in the world who can give my children what they need at this time, even if it is killing me somewhat limiting my vitality. I don’t see a clear way out of doing what we are doing presently, but I’m actively considering there might be other ways to live and learn which can work for all of us, including me.

I’m a little loopy after IVIG, but Seth…he’s fine.

Seth had his third IVIG infusion today and it went well. Todd made sure to get the morning off so he was there for moral support. We went at a slower rate, and even had to slow that down when I noted Seth getting antsy (which was the first sign he was having a problem last time). As soon as they lowered the rate, he was fine. He’s a little trooper and so is his sister who sat there in the tiny room for the four hours it took. (She has her iPod and snacks so it isn’t exactly torture, but it’s a long time to sit).

I am exhausted and didn’t realize how much I was “holding” as in energy, as in worry, as in the weight of the world, until after it was over and I knew he was safe. Presently, I feel like I could nap for a week. Thank you for keeping him in your thoughts and prayers.

My 40 Days program. Let’s see.  They want you to keep a food diary and what I’ve discovered is I mostly eat scraps. I make the kids a meal and eat what they don’t. I rarely have a nice, present, sit down, calm meal. I am so burned out from cooking. For so many years I had to make every little morsel from scratch. And as the mom, I sit down at the table and someone needs this, and someone needs that, and someone needs to be told to chew with their mouth shut, again, and someone spills something and it is never really relaxing for me. I hate being interrupted a bunch of times while I’m eating. And HT’s schedule is so all over the place, he’s not home for dinner half the time, and Seth doesn’t like anything and dinner has become this thankless, stressful obligation, so I slap it on the table like a short order cook and eat “what’s left.”

Kind of horrid if I really think about it. I want to teach my kids to be present when they eat. I want to have lovely conversations at dinner. Is that just a Norman Rockwell pipe dream? Does anyone really do that? What I often am at dinner is annoyed. And whooped. And so I’d rather just not bother. I don’t like eating when I’m irritated (unless it’s chocolate ice cream…then full throttle baby). Or I eat late with Todd, right before bed, nachos, buttered popcorn, etc.) and there’s a bad idea for you.

So I’m thinking I have to be the grown up here, and set the tone. Involve the kids more in dinner prep. Make a prettier presentation. Let them “get” for themselves so I’m not up and down during meals. And most definitely not wait for the man of the house to be home to feed myself. I need to treat myself with as much care as I would  dear friend.

Would I ever have Amy or Melinda over and offer them the scraps of leftover mac & cheese from the kids’ dinner plates? Or maybe give em’ a spoon and let them have at it right out of the pan, standing in the kitchen? Or serve them the crusts off a kid’s sandwich? Or give them a half eaten yogurt? Or a half eaten bowl of cereal?

I would not.

You know why?

Scraps are for hogs. And compost heaps. Not friends. I need to be more of a friend to myself.

I am not a hog or a compost heap.

That might be my new mantra.

Say it with me.

Lovingly yours,

MO’N

 

Do No Harm (Phenergan IV Push)

Since Seth’s bad reaction to his IVIG I have tried to get in contact with the doctor who ordered it. He was not there the day of the reaction. Another doctor was on call. I wanted to make sure he knew about it, and I wanted some reassurance about running the IV at a slower rate next time, and of course, I wanted to ask him about the Phenergan IV push in case, God forbid, his nurses were running it in like that without his knowledge. He didn’t return my phone message. He didn’t acknowledge my email. We have another infusion scheduled for next week, so I called again yesterday. The nurse said he’d probably want us to come in to talk to him. He doesn’t talk on the phone.

“My child doesn’t need to be examined. I need to talk to the doctor,” I said, incredulously.  For God’s sake. Riley’s orthodontist called the night she got her braces to see how she was doing. Seth has a severe reaction to an infusion and this guy doesn’t even bother to follow up? And wants us to pay for an office visit to talk to him about it? Hell no.

Somehow the nurse convinced him to come to the phone. The following is my remembrance of the conversation:

Me: I’m very disappointed that you never got back to me after Seth’s last infusion.

Him: I’m very busy. I get hundreds of calls per day. I can’t get back to everyone. I’ve got people coming from all over the country. We’re the only ones doing this for miles. I’ve got people coming all the way from Kentucky to see me. I try to get back to as many as a I can, but I can’t get back to everyone. In twenty years of doing IVIG, I’ve never seen a reaction like this. Never the vomiting and explosive (paraphrased, he said some medical term for explosive liquid) diarrhea.

Me: All the more reason to follow up with the parents, if his reaction was so rare.

Him: I think we have to consider the possibility it was the flu.

Oh. 

My.

God.

Me: He was fine before the infusion. He was back to his old self within an hour of being home. He was fine until the rate of his IV was increased. He got better as soon as it was decreased. He did not have the flu.

Him: It’s just that we’ve never seen this kind of reaction. He may not be able to continue with the infusions.

I got the distinct feeling he didn’t want to continue with me.

Me: But we were able to finish the infusion. Once the rate was reduced, we finished it and he did fine. I want to make sure that his next infusion is run at the slowest rate.

Him: Yes, we can keep it at a slow rate. And I can order Zofran (the anti-nausea med I requested last time, but didn’t get, and instead Seth got Phenergan IV push).

Me: So let’s address the Phenergan issue.

Did he really order it IV push, or is his nurse giving it the wrong way? 

Him: We’ve always given Phenergan IV push. We’ve been doing it that way for twenty years.

Scary. 

Me: But it’s no longer standard practice. A quick Google search will show you a bunch of class action lawsuits. They don’t do it like that in the hospitals anymore. My husband is a hospital pharmacist and he says it’s not been given that route in at least ten years.

Has he really done no continuing education?

Him: We’ve always done it that way and have never had any problems.

Me: If you have never had any problems with giving Phenergan IV push, then you’ve been  lucky, and you are playing Russian Roulette.

Him: We’ve always done it that way and have never had a problem.

Oh.

My.

God.

He apparently has no intention of doing it any differently.

Him: If you don’t feel comfortable with our practice, then maybe you need to go somewhere else.

Me: But you just told me you are the only game in town. Where else would you suggest we go?

Him: I’m just saying, if you aren’t comfortable with us, maybe it isn’t the right fit.

Me: Are you saying you don’t want to treat my son because I am questioning you?

Him: No, I’m not saying that.

Me: I’m not trying to be difficult, I’m trying to help you. I’m trying to help your patients by bringing to your attention what can happen if you give Phenergan IV push. GRAPHIC PICTURES MAKE SURE YOU HAVE THE STOMACH BEFORE YOU CLICK.

I want to make sure if we come for Seth’s infusion next week, that the rate will be slow, and he will get Zofran, rather than Phenergan.

Him: Yes, we can do that, but we’ll have to order it. We don’t carry Zofran typically.

Me: Okay. Order it.

We left it that we would be coming, but I’m not sure. Todd thinks we should not deny Seth this opportunity to heal. It takes three or four infusions before benefits are typically seen and Seth’s been really suffering. Todd made sure he took the day off so both of us can be there to supervise and monitor Seth. He wants to just use this place for what we need it for. We’ll keep an eye on the rate and the medications ourselves.

I don’t know. My confidence in them is lost. If Seth has another reaction, or God forbid anaphylaxis or something like that, do I trust them to save my child? It’s not in a hospital. It’s at a doctor’s office. It’s not like they can just zip him down the hall to the ER.

I feel the weight of the world on my shoulders. I am sick of being forced to make such weighty decisions. Sick of my child being sick. Sick of big ego doctors and healers and therapists and no one having a freaking clue. With few exceptions they all think they are the “answer” except there has been no answer. Seth’s incontinent. He can’t sleep. He’s too scared to go upstairs to the bathroom in our house anymore, unless someone comes with him. And the tics. The endless tics. His ribs hurt. His jaw hurts. His vocal tic is non-stop.

And while I am sick of them not knowing, I can accept it. We don’t know what we don’t know.

It’s the arrogance that gets to me.

* Professional guitarist, Diana Levine lost an arm after being given phenergan IV push.

Gentle, gentle

So the other day when Seth had a bad reaction to his IVIG infusion, Todd slipped out during the ordeal and took Riley to the orthodontist before they closed for the weekend. It was imperative they correct a couple of stray wires that had come loose and were poking Riley in the cheek like needles.

She’d had the braces less than 24 hours and her mouth was sore, not just from the poking wires, but from the whole thing.

She sat bravely in the chair as the professional fiddled with her braces, and according to HT, at one point Riley suddenly stopped her and said sweetly but with conviction,

“Excuse me, could you be a little more gentle with me please?”

How many adults would be courageous enough and/or feel justified to stand up for themselves in this way? She didn’t fly off the handle. She didn’t heap any judgement on it. She didn’t melt down. She just asked for what she needed and got it.

What would it be like if we routinely asked others to be more gentle with us? What if, the next time we were about to make a self-deprecating remark we stopped and asked our inner critic, “Excuse me, could you be a little more gentle with me please?”

He’s Fine Now

Seth had a bad reaction today during his second IVIG infusion for his immune deficiency. He’s okay now, but it was not good.

He did fine his first infusion, and he was fine today, and then they increased the IV rate. Shortly after that, he became nauseous and needed to pee, so I took him with his IV pole into the bathroom and left Riley in the infusion room. Once in the bathroom, Seth became really ill and began throwing up. I left him for one second and ran to the office, shouting from the door for someone to help, and the only one who answered was Riley. I don’t know where the rest of the staff was, maybe in with other patients. 

“Riley, tell them Seth is sick.”

She did. Soon a nurse was there and she stopped the infusion.

I sat Seth on the toilet seat, and he kept throwing up into a waste basket, but he could barely hold his own body up, so I kneeled on the floor facing him, and he slumped onto my shoulder, moving me out of the way every so often so he could puke. He kept saying he wanted to lay down, but I refused to let him lie on the floor in the bathroom. 

Finally, I let him kneel on the floor with his arms resting on the toilet seat. I didn’t like the idea, but it was a one seater bathroom, we were the first appt. of the day, and I figured it had probably been cleaned overnight. My knees couldn’t take kneeling like that to support him much longer.

So kneeling, his forearms on the toilet seat, I’m rubbing his back and there is the sound of an explosion. He had massive liquid diarrhea in his pants and didn’t even react, he was so completely out of it. I’m trying to take his pants off, and clean him up, and hold him up, and where the fuck is the nurse? And she comes in after what was probably five minutes but seemed like an hour and takes his temp. His blood pressure was 80 over 40. She started a different IV, just fluids.

Keep in mind, as all this is happening, Riley is having a problem with her brand new braces, and there are metal wires that have come loose and are poking straight into the backs of her cheeks, and she will not survive the weekend if we don’t get to the orthodontia office before they close in the next two hours. If all had gone well, we’d have had plenty of time.

With my cell I call Todd at work to ask him if there is a possibility he could come help me. As I explain what they are about to do, (give Seth an IV push of a med to help the nausea, and another one to help the inflammatory reaction, Todd the hospital pharmacist starts yelling at me through the phone YOU DO NOT GIVE THAT MED IV PUSH,...as the nurse is pushing it in, and Seth starts crying because it is burning..BECAUSE IT ISN’T SUPPOSED TO BE GIVEN IV PUSH) and I’m on the floor in the bathroom holding him up with Todd mad in my other ear and my baby is so sick, and Riley is God knows where, on her own.

We got Seth back into the infusion room, and he was pretty wiped out. He looked so pale, and weak, sitting back in a recliner, wrapped in nothing but a blanket from the waist down. I had not thought to bring extra clothes in case my nine year old pooped himself. I held him and rubbed his forehead and Todd came bursting in the room and Seth opened his eyes in a flutter and said in a tiny weak voice, “Hi Dad. How was work?”

I had to bury my face in my shoulder to hide my tears. Our boy is so freaking sweet, he feels like death and he inquires about his dad’s day the second he sees his him. Todd got all choked up too.

Finally, we got him settled, feeling better, and we continued the IVIG at a very slow rate.

Todd took Riley to the orthodontist, and came back quickly.

After we finished the PA came in to talk to us. In that way many doctors have of not wanting to take accountability he suggested maybe Seth has the flu, and asked if he’d had his flu shot? The child was fine, they increased the IV rate, he had a reaction. It isn’t the fucking flu.

“No. He hasn’t had the flu shot and he won’t be getting a flu shot.”

“Do you want to tell me why?”

What I said was, “No. We’re done talking about this.”

What I meant, and what I’m pretty sure came across was, “If you keep going with this, you are going to be a freaking carcass before lunch.” I’d had enough. And I am no longer in the business of trying to convince anyone about anything. If you don’t know flu shots are filled with crap and ridiculously ineffective, and about profit rather than public health I don’t know what to say. It’s not worth my energy to debate you.

“Just considering all the possibilities,” he mumbled upon retreat, defeated. I’m sure he’s pitying my “ignorance” as much as I pity his.

We finished the infusion. Seth is home. And he’s fine. He’s playing with his iPod. His appetite is good. No flu.

I am so jacked up right now I probably didn’t need coffee or the two donuts I just emotionally consumed.

Two down, four to go(infusions, not donuts, I’m done with donuts).

I sure hope this IVIG helps our boy.

Braces

Riley got braces today.

Her first dental appointment when she was a little girl was a nightmare for her and one of the worst experiences of my parenting journey thus far. As she got older it was evident she had a major need for orthodontia but I doubted she’d ever be able to tolerate it.

Today, she was so excited. She could not wait.

To her, braces mean being a tween. Being cool. Being like everyone else.

After her appointment, we went to the mall (and we never go to malls, I hate them) because she wanted to. She wanted to celebrate. We got smoothies and then walked around.

She still gets panicky and reaches for my hand stepping onto escalators, unable to perceive depth well. She’ll forget to let go when we get off the escalator and continue holding my hand as we walk through the mall, (not too cool for that at eleven years old). Hand in hand, this is when I am reminded how much she still reacts internally to external stimuli. She may not scream, but holding her hand, I feel her tension. When we walk by something extra noisy or a scary poster, or a perfume salesperson getting too close in our faces, she flinches. Her hand grips mine extra hard.

She still has sensory issues, but she gets through it. Brave, brave girl. She has worked so hard to be where she is now.

Our orthodontist has been building a relationship with her for years, preparing her for this day. Having us come in every six months, free of charge, just to peek in her mouth. Not even doing anything, just getting her used to him. Getting her used to the idea. Selling her on the coolness of braces.

Some days I am overcome by the kindness of people.

In the chair today, Riley asked intelligent questions. She dealt with all the sensory components of getting her braces on. She beamed when they gave her a mirror to check herself out in. She was pleased with her choice of neon green and purple bands.

She’s happy. She’s a happy girl.

I have this feeling, she’s going to be okay.

And I will never take it for granted.

Snapshots

I’m going on a date tonight with Hot Toddy. It’s been a rare thing for us over the past eleven years, though hopefully it will become a more regular occasion ’cause a friend and I are experimenting with a monthly child care swap for date nights. To celebrate, I am posting some fun snapshots. Frankly, I could use a little more fun. I’ve been a bit Yellow Wallpaper lately (though I realize I am the only one with the key to the door).

So far, my funk doesn’t appear to be affecting the children.


This next one isn’t recent, but IMHO you can never get enough of HT in the Hannah Montana wig. It’s like, sacred.

Todd: I notice there are no pictures of you on this post.

Me: Get your own blog Blondie, and you can post whatever you want. 

Did you know Chihuahuas are made of rubber? True story.

Tanya has to hide in a drawer to get any peace. And even then, it’s no use…. (I know how she feels). Seth is very, very, very, VERY, needy these days. The PANDAS thing. Clingy Mc Clingerson. 24/7.  Still getting to the bottom of it. We WILL get to the bottom of it.

At least I can entertain myself with his very elastic cheeks.

I love the boy. I do.

But I really need this date.

Lovingly yours,

MO’N

Self-care

Todd has today off and is not working until tomorrow afternoon. With his encouragment I am at a hotel two seconds away, and for the next 22 hours, I do not have to answer to anyone. No one will demand a thing of me. I’ve got my Trader Joe’s peanut butter cups. I’ve got my Limeaide. I’ve got my O Magazine. I’ve got my iPod with all my meditations.

I’m going to take a long hot uninterrupted unhurried shower. I’m going to snuggle up with Oprah. I’m going to catch my breath.

Fighting the urge to justify it by telling you what I don’t spend money on, that so many women do. But you know what? To hell with that. I’m rocking the hotel and the peanut butter cups. I need it. We can afford it. I’ve already spent too much time on this short paragraph.

See ‘ya later alligators. I’m ’bouts to get all rejuvenated.

Glee – You’re on Notice

Shuffling out of my bedroom still half asleep, I’m greeted by my bright-eyed tween with her usual morning after questions.

“Did you watch Glee?”

It’s our Tuesday night assignment. She can’t watch Glee ’til we’ve watched Glee and screened it. And she might explode if she doesn’t get to watch it, today. She’s as “hopelessly devoted” to Glee as I was to Grease when I was her age. Only more so.

I hug her tight and she stands on her tip-toes, arms around my waist. The tip-toes are to make herself taller than me. It’s new, and she can’t stop doing it. We look at each other eye to eye.

“We need to talk about Glee.”

“Was it appropriate?” She asks, hopefully.

“Well, most of it was okay, but there was a part that really upset me.”

Her face drops. I call her father and brother into the room. Todd and I talked for hours the night before about how to address this and I can’t say we’ve really figured it out.

“Riley, you know how sometimes kids with Asperger’s, when they are having a hard time, they can be misunderstood and people think they are brats?”

She nods.

“I mean, even Dad and I didn’t get it at first, right? When you were little?”

She waits for more.

“Well last night on Glee, there was this new character, who behaved really badly, and said because she had self-diagnosed Asperger’s, she was entitled to act like a brat.”

“What did she do?”

“She insulted the Glee club, and even though she wasn’t talented, she felt she should be the star of the show, and she was really mean and rude.”

Todd adds, “She might not have really had Asperger’s, we’re not sure, but was using the diagnosis, as an excuse for her bad behavior.”

Riley looks back and forth to each of us.

I continue, “And we really were mad about it, because it’s not fair to stereotype kids with Asperger’s like that. You have Asperger’s and you would never act that way. You are never cruel. You don’t think the world owes you favors. That’s one of the reasons I love writing about you, because it gives people an understanding of how sweet kids with Asperger’s are. You’re a great ambassador for Asperger’s.”

Neither child knows what an ambassador is, so we explain the concept, while inwardly I question whether that’s a bit much to put on a child. Will I ever feel like I’m not winging the parenting thing? Ugh!

Seth nods along, affirming his sister’s awesome ambassador worthiness.

Riley listens intently, then says, “Maybe the writers didn’t mean to depict Asperger’s in a bad way.”

That’s my kind hearted girl, always giving people the benefit of the doubt.

Todd says, “Maybe not. And maybe they’ll take the story line further and explain more about what Asperger’s really is in future episodes. We don’t know.”

Her face suddenly twists up with worry.

“Can we just assume they aren’t talking about me?” she asks, her voice rising a couple of octaves.

The second agreement from The Four Agreements pops into my mind. Don’t take anything personally. Could I just assume they aren’t talking about Riley? Could it really be that easy?

Somehow I feel I have to protect her from what the world thinks of Asperger’s. She’s not rude. She’s not lacking empathy. She’s not robotic. I hate those stereotypes. And I’m not sure Riley really understands the repercussions for kids like her if negative stereotypes about Asperger’s are propagated unchecked in our society.

But then again, I know how pushing against something makes it bigger. Why not just let Riley do her thing, and continue to touch the people she touches, and change perceptions in her own little microcosm, one heart at a time?

Finally she looks at me with tears in her eyes and squeaks out her worst fear about the whole thing,

“Are you not going to let me watch it?”

This is where I want to put the powers that be at Glee on notice. Seriously. Ryan Murphy? Brad Falchuk? Ian Brennan? Dante Diloreto? (My daughter told me your names. She has everything about the show memorized). It’s really unfair to make people who are so vulnerable the butt of your humor. What’s next, kicking puppies? You better redeem yourselves or I’m leaving your viewership and taking a whole lot of people with me. The autism community is a big one, and it’s a divided one, but I think we can all agree, don’t mess with our kids. And BTW? We have lots of friends. 

I look at Riley and tell her, “We’ll keep watching it, and we’ll keep talking, okay?”

She sighs big. Relief all over her face.

She loves you Glee.

Keep that in mind.

Big Fun and Mac’s Backs After Tommy’s

We went to the Coventry area for dinner tonight. It was too hot to cook. Attached to the wonderful Tommy’s restaurant is the infamous Mac’s Backs. A local independent. A Cleveland establishment. I brought some of my bumper stickers and put them on the bulletin board, but when it came to talking to Suzanne, I totally chickened out. I can promote the daylights out of anyone else’s work, but for some reason, my own? Not so much.

It’s not that I don’t believe in the book. I do. I know it has an audience. Over and over I am hearing from readers, “I couldn’t put it down.” People are reading it in one or two days. I’m not saying Daughter of the Drunk at the Bar is a masterpiece, but’s it’s my own, and people (even those I don’t know) are e-mailing me unsolicited and saying good things. 

Back to Mac’s Backs. We walked out. I had lots of excuses. I needed to put more money in the parking meter. The kids were suddenly thirsty. So many reasons why I couldn’t talk to Suzanne. Not then. Maybe another day, when the kids aren’t with me. It’s too hard. I don’t want to bother her. Gotta run. 

So anyway…right near Mac’s Backs is a store called Big Fun. Seth’s favorite. A novelty store full of crazy toys, nostalgic things, gross things, FUN things. Some freaky things. Packed to the gills with “Big Fun.” Even the ceilings are painted in graffiti. Riley has never gone in. It has always been too, too much for her heightened sensory system. Merely peeping in the window has frightened her.  

Tonight as we were walking by I asked if she would like to go in. Predictably, she said no. We stood in front. Little brother perfectly willing not to push for it, not to upset her, totally wanting to go in. I said, “Riley, I think you are at the point where you could do this now. You are handling things so much better. You are really growing up.”

She is.

Seth looked hopeful but tried to act casual. He shrugged, hands in pockets, fedora on his head.

“I don’t know,” she said.

Gently I said, “Riley, I think your fear of this is worse than the actual reality of what’s inside. You can do this.”

We stood there, the three of us taking deep breaths, getting up her nerve. She clutched my hand tightly and at last, we went through the door. Once in, she was cautious for about sixty seconds, repeating to herself, “I can do this. I can do this.” Then, she wound up loving it. So many fascinating trinkets to look at. So many whoopie cushions.

Watching my daughter explore the store, I admired her so much. She is so brave. I am such a chicken.

The kids had their big fun for a half hour. Stepping out of the store, it was my turn. If she could be that brave, I could too. Back to Mac’s Backs.

Suzanne was there, warm and lovely. Supportive. She bought a copy of Daughter of the Drunk at the Bar (which I had in my bag) and said she’d order more to sell in the store. Can you hear me exhale?

The Universe wants to support me, if only I’m brave enough to ask.

I can do this.

I can do this.

I learned it from my girl.

Her Mother’s Eyes


Riley steps out of the shower and I put the towel around her, draping it over the top of her head so just her face peeks out. I pat her dry a bit then hold her by the shoulders and stare into her eyes.

Somehow in this mundane moment, I am overcome. I love her so much. I remember her little face peeking out of the towel when she was a baby. Those same huge, innocent eyes. She smiles at me.

“Riley…when you look into my eyes, what do you see?”

I want her to remember it. This feeling of her mom looking into her eyes and loving her. I want it in her bones. In every cell of her body. She’s growing up on me. I want her to remember this, if nothing else from her childhood. Her mother’s eyes full of love for her.

She looks at me thoughtfully, and replies, “sockets.”