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The Divine Ms. R.

Posted on June 5, 2012 by Michelle O'Neil

I’ve mentioned Riley’s lack of false modesty here before. If you give her a compliment, her usual response is to agree with you.

You: “You are so cute!”

Her: “I know.” (We’ve worked on a simple thank you being a nice response).

Or,

You: “Your hair looks so cool!”

Her: “I have to admit, it does.”

If you didn’t know her, it might sound like conceit but it really isn’t.

She does not think she is better than anyone else. She thinks everyone is as fabulous as she is. Someone could be butt ugly, and she would not notice it and would find something to praise in them. Someone could act like a total jackass, and she would defend them with, “It’s not their fault.” She knows people act out when they are hurting.

What if every compliment given were accepted? What if we didn’t deflect them? What if we all gave people the benefit of the doubt?

What if we all loved ourselves so much, we could hold only love and appreciation and compassion for others, and nothing else?

My baby turned 12 yesterday. And she is beautiful. Just ask her.

Posted in appreciation, Asperger's, Uncategorized | 7 Comments

Music Therapy

Posted on June 2, 2012 by Michelle O'Neil

Last night was the music party which completed Riley’s year of music therapy. It was bitter sweet for me, because she will not be continuing with music therapy in the fall.

Riley has a wonderful musical ear, which we tried to encourage from a very young age, but formal instruction proved too stressful for her. We felt she was on the verge of throwing the towel in and wanted her to continue to love music, so we made the choice for MT. Over the last three years she has grown so much. She is no longer the little girl having a panic attack if she played a wrong note (fingers not as precise as her ear). She gained so much confidence and grew close to her therapist.

At the recital last night, I sat and watched as many people of various ages and abilities performed. You need tissues for that music party. One woman comes up to the microphone so excited she throws her hat into the air, (three times) before singing. Joy just uncontainable in her. Another student, a man with Down Syndrome, learned to play the graduation theme on the piano. He worked so very hard, taking several slow seconds between many of his notes, but he persevered and he did it. He dedicated the song to his niece who was graduating this year.

There was a group of young women who call themselves Best Friends Forever who performed a few songs together. Music therapy providing a peer group for them.

As I watched these children and young adults and older adults perform, I was struck by the love that has gone into each and every one of them. Many of them will never live independently. Someone is taking care of them. They are cared for. Someone gets them to music therapy. Gets their “nice clothes” ready for them. They are loved.

One man who was blind, and cognitively young, insisted we all sing along to the songs he played on the omnichord. He played Oh When the Saints Go Marching In and and He’s Got the Whole World in His Hands. And everyone sang along. And I felt He did have the whole world in his hands. I felt like we’re all going to be okay.

Seth rocked out in his chair to the Bruno Mars songs that a couple of students performed, taking these performers as seriously as he would any other, even if they mumbled through words and stood stiffly at the microphone.

Riley performed a duet with her therapist. They played Kelly Clarkson’s Breakaway. My girl played the piano and sang these words,

I’ll spread my wings and I’ll learn how to fly
I’ll do what it takes til’ I touch the sky
And I’ll make a wish
Take a chance
Make a change
And breakaway
Out of the darkness and into the sun
But I won’t forget all the ones that I love
I’ll take a risk
Take a chance
Make a change
And breakaway

She hopped up to the microphone to introduce herself and took the cutest little bow at the end. Full of happy confidence. Her voice a sweet soprano. Her fingers doing the job on the piano.

On the way out, the man who was blind was being led by an aide dressed in scrubs. He asked her, “Are you proud of me?”

She said in voice filled with so much love, “You have no idea.” He smiled big as he shuffled off toward their car, with her at his elbow.

I am so thankful for The Cleveland Music School Settlement where people of all abilities are allowed to grow and experience music. It is such a unique place. The Settlement turns 100 this year. Imagine how many students have passed through its doors! I am so thankful that Riley was provided a safe place to foster a love of music over the last three years. It’s been a beautiful experience for her.

Posted in appreciation, Asperger's, special needs, special needs siblings, Uncategorized | 10 Comments

A Camper’s Dream

Posted on May 30, 2012 by Michelle O'Neil

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.

Posted in appreciation, Asperger's, special needs parenting, Uncategorized | 11 Comments

Finding my way on the deck

Posted on May 29, 2012 by Michelle O'Neil

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.

Posted in appreciation, Asperger's, special needs parenting, Uncategorized | 16 Comments

Memorial Day

Posted on May 28, 2012 by Michelle O'Neil

Gratitude to the Russells and to all who are serving or have served our country.

Thank you.

Posted in appreciation, Uncategorized | Comments Off

Self Imposed Doors

Posted on May 24, 2012 by Michelle O'Neil

We have this little nook in our kitchen. It has shelves above it that store our everyday plates and cups and glasses and platters. We use it constantly. The counter used to become a catch all, getting out of control with the paperwork of everyday life. I’ve been working hard to keep it mostly clear since we re-did the countertops.

Anyway…the shelves. They had these thick sliding glass doors, probably original with the house. Old and sturdy. The tracking was off, and they were always jammed. Every time I went to put something in there or take it out, they would not open and it was just this aggravation every single day. Lately, I’ve had the idea to take the doors off. I’d glance at the cabinet wistfully, think about getting rid of those damn doors, then I’d think….I’d probably have to hire a handyman. How could I possibly do it? Inertia would set in. Sigh.

But today, I actually went over and investigated, and I was easily able to lift both glass panels (and man are they heavy)out. It took about twenty seconds. And now it’s free and easy access to the shelves I use constantly. It is a breath of fresh air!

And I wonder how many other problems I put up with, when the solution is so easy. So within my means?

Posted in appreciation, Uncategorized | 6 Comments

Boat Lift

Posted on May 23, 2012 by Michelle O'Neil

I saw the video below on a friend’s Facebook page. At first I didn’t want to watch it, because honestly, thinking about 9/11 is still traumatic for me. I was half way across the country in the Chicago suburbs at the time. Riley was a baby. I watched the footage all day to the point of making myself crazy and sick. I didn’t know better at the time. I felt I had to be tuned in, in case. It made a housewife in Chicago tremble in fear, and I can’t even imagine what it must have been like to be in NYC. Fear beyond fear.

Boat Lift is different. It’s what the news didn’t mention. A call for help was put out and instantly, boats showed up to evacuate people off Manhatten. Boats that were out floating around doing whatever, work, pleasure…they stopped all they were doing and drove right into the thick of it.

They helped. I always think of Mr. Rogers and his famous advice…. “look for the helpers.” When dealing with any type of problem, especially disaster, teach your children to look for the helpers. They are there.

Boat Lift (narrated by Tom Hanks). The perfect short film to renew your faith in humanity.

Posted in appreciation, Love., Uncategorized | 4 Comments

Craving

Posted on May 21, 2012 by Michelle O'Neil

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.

Posted in special needs parenting, Specific Carb Diet, Uncategorized | 7 Comments

Our Mini Vacation in Hocking Hills

Posted on May 18, 2012 by Michelle O'Neil

You could barely see our cabin from the one lane dirt road you drove up on to get to it. It was the perfect combination of comfort and rustic. Nothing fancy. And yet, it had a full kitchen (complete with coffee maker, crock pot, blender, etc.) and a screened in porch and a very clean hot tub. The beds and pillows were comfortable. The blankets were old, but clean and soft. The place was not perfect, but perfectly cozy. This was the view from the loft the kids slept in.

This was the view from the screened in porch. I spent a lot of time here, watching the hummingbirds. Watching my breath. Feeling nature tend to me.

We did lots of hiking, but the trails were not terribly strenuous. Riley did well. Below she is bravely conquering her fear of heights, going up a super steep set of stairs on the side of a cliff. It was touch and go. It wasn’t easy for her. She still has depth perception issues and still has anxiety, but she did it. Jingle did it too, and I think she was just about as scared as Riley.

There are so many trails to choose from in Hocking Hills. We only hit three of them, Ash Cave, Old Man’s Cave and Conkle’s Hollow. It’s otherworldly there. Everything is so rich and lush and green. The air is so clean and breathable.

The second day, Todd and I got into a fight. The roads were one-laners, dirt, super curvy, tons of blind hills. He insisted on driving just a little faster than I would have. In situations like that, I think the person who is afraid should have final consideration or say. If I feel terrified, you should slow down. And we got a little lost, which makes him crazy. It’s the end of the freaking world if Todd is lost. Honestly, I don’t know how I live with this guy. If only he weren’t practically perfect 99.9% of the time.

We made up in the hot tub. Not in a “let’s get it on” way…. but in a relaxing, my head on his chest, so relaxed we’re almost asleep way.

I’d forgotten my bathing suit, but after a long hike, while the kids were busy watching TV, I went in naked on top, underwear on the bottom. After all, we were out in the middle of nowhere. Who would see?

I’ll tell you who would see. The dude who comes by to maintain the hot tub, that’s who. Ask me how I know. It kind of hot tub traumatized me.

Oh well, at least the kids had fun in it while we were there.

We had birthday cake for Todd and played cards. The kids drew in their sketch pads, and played with some new little cheap toys we picked up in town. I read. Todd watched a little sports. It was just totally low key.

Vacations don’t have to be big. They don’t have to be Mexico or Alaska or the Caribbean.

This was just three hours away. Just three nights. We made all our meals ourselves. It was so good to unplug from the Internet and the phone and the iPods (yet still get to cuddle up together and watch Dancing With the Stars). It was so good not to deal with the stress of travel. It was a vacation, but not a production.

I re-enter daily life calmer, and more appreciative, and just filled up with the beauty of the world, feeling so very blessed.

Posted in appreciation, marriage, Uncategorized | 12 Comments

Singing & Hiking

Posted on May 17, 2012 by Michelle O'Neil

It’s been busy.

Windsong had a really fun concert on Mother’s Day. We hosted the The North Coast Men’s Chorus and did a combined couple of numbers with them and it was so much FUN! I love being part of this chorus.

The next day we packed up and went on a mini vacation to Hocking Hills, Ohio. No Internet. Cabin in the woods. We celebrated HT’s 47th b-day.

And did lots of hiking.

More soon.

All is well.

Love.

Posted in appreciation, Uncategorized | 5 Comments

Susie Homemaker

Posted on May 8, 2012 by Michelle O'Neil

So while it has been nerve wracking and awful at times, trying to figure out what to feed everyone (Todd doesn’t like coconut, Seth doesn’t like anything), I have to admit it is quite gratifying to see my children gobbling up lentil soup for breakfast. Reaching for apples rather than cereal bars for snacks. Seth is eating so much more than he ever would before, now that his options are narrowed and sugar and grains aren’t in the picture.

And I am working hard! But I’m finding my way. In another month it will be easier, once I’ve got my system down.

This week I was reading through some of Riley’s writing for a class she’s taking and she was asked to list some of our family traditions. One of them was Thanksgiving and it went like this:

“We watch the parade, and then go over to someone’s house to eat.”

“Someone’s” house. Certainly not our house!

Isn’t that hilarious? At 43 I have never hosted a big holiday meal. I get hives just thinking about it. I’m not a natural in the kitchen. Timing is hard for me. Getting everything to be done at the same time. I am a mess, sweating. Harried. I can hardly handle just the four of us, sitting down to a typical evening meal.

It’d be a lot more fun and sexy if I were paid for all this cooking. Then again, this morning, my sweet Riley took a bite of a Paleo bread I made. It was just out of the oven, slathered in butter. She sighed, and kissed me on the cheek and said, “You are a great cook Mom!”

This girl never kissed me ’til she was seven or eight.

There ain’t money enough for that.

*Thanks to Melinda who not only had us over for Thanksgiving last year, but also gave me the recipe for the kiss-provoking bread. xo

Posted in Specific Carb Diet, Uncategorized | 11 Comments

The Hardest I’ve Laughed in a Long Time

Posted on May 6, 2012 by Michelle O'Neil

I feel like I can’t live with myself if I don’t tell you about this. I mean, maybe you already know, in which case, why didn’t you tell me?

Betty White’s Off Their Rockers.

It’s old people “punking” young people. It’s hilarious. One of the things I love about it is how nice the young people are. How graciously they let the old people get away with so much!

I hope you watch it and I hope you enjoy it.

You’re welcome.

Posted in appreciation | 4 Comments

The Grump Family

Posted on May 6, 2012 by Michelle O'Neil

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.”

Posted in appreciation, Asperger's, autism, Forgiveness, special needs, special needs parenting, Specific Carb Diet, Uncategorized | 7 Comments

Specific Carb Diet….Again

Posted on May 3, 2012 by Michelle O'Neil

So, we tried IVIG for six months, and while it is doing a bit of good in between infusions, by about the third week Seth’s tics start happening again. His strep titers are still quite high. It is more of a band-aid and not getting to the bottom of Seth’s PANDAS problem.

When we first moved to Cleveland, we were on the Specific Carb Diet, (and had been on it for about 18 months, and wheat free before that) to help Riley with her digestive issues and hopefully her anxiety. It didn’t do much for her anxiety, but we were all so much healthier than we are right now. At the risk of TMI, I have two children who regularly clog the toilet with the size of their “deposits.” It isn’t normal to look at a little 55 pound kid, and think of him shitting a brick. And yet, he does. We plunge. We plunge much.

Riley’s intestines have always been off. Constipation is only kept in check with high doses of daily Magnesium. One missed dose and we have trouble.

We moved to Cleveland five years ago because the school system in Virginia SUCKED as far as autism understanding. Moving was stressful. The school we moved for didn’t work out and we pulled Riley out of it after two weeks when I picked her up to find every blood vessel in her eyes broken from crying so long and hard. We quickly found another school that seemed great, rushed to buy a house to live in the district, and the teacher Riley would have had, blew an abdominal aneurysm first week. During all this, an M.D. we began working with here convinced me that we didn’t really need the diet, she’d done some work with us to eliminate allergies, and those foods weren’t “allergies” for us, yada yada. I knew better, but I just wanted to be normal for a minute. I wanted to NOT have to make every morsel my family ate from scratch. Life was so stressful! We weren’t seeing many behavioral gains in Riley, which was really the big thing we were looking for. I didn’t have a freaking dishwasher. Or AC. And the oven has to be on all the time if you are eating this way. It was all too much. My arm did not need any twisting to toss it all out the window.

We kept up with eating healthier than probably 95% of America, but wheat and sugar quickly became addictions for all of us. I went into early menopause at 38 and quickly put on 15 pounds. Todd probably gained twenty. And Seth. Seth’s health issues began to show themselves in earnest.

So, we’re going back to this way of eating. I’ve been busy, clearing out my kitchen, starting over, researching recipes, cooking, cooking, cooking. Buying more chicken (and even some meat) than this former vegetarian can wrap her brain around. I’m making yogurt. Grinding nuts into flour.

I know it will become easier when I get into a groove. The hardest part is always social. So much revolves around food. Some people don’t understand. I don’t miss the raised eyebrows. The “is it a true allergy?” questions. The “can’t he have just one?” It’s hard enough to do the work of the diet, but to have to deal with other peoples’ skepticism….it just really blows.

Luckily I know other mothers here whose kids have food issues as well. It makes the kids feel less freaky.

Todd’s been hinting for a couple of years that he would like to go back to eating this way because he felt great on the SCD. He didn’t push though because he knows 90% of the work falls on me. Having spousal support for something like this is key. Knowing he’ll worship me keeps me focused. LOL.

We’ve talked with other families that have had success eliminating tics by changing diet. We want to leave no stone unturned. If this helps Seth, it will be worth it. If you want to know more about the diet or how a leaky gut can cause neuro symptoms and other health issues, there is a lot of free info on line. Start here for links and recipes. Or look at the GAPS diet, which is similar.

I’ll try not to be too self-righteous about it.

Pinky swear.

We’re going in.

Posted in Asperger's, PANDAS, Specific Carb Diet, Uncategorized | 10 Comments

Josie 12/97-4/12

Posted on May 1, 2012 by Michelle O'Neil

When we first got married, Todd did the rational thing to buy some time and push back the baby lust I was having. He got me a puppy. At the time we were clueless about pet stores and puppy mills and we wandered into a cute little independent pet store to look at the kittens. We saw a cage and upon first glance thought it was full of guinea pigs, but turns out they were tiny puppies. Peek-a-poos.

I held one and looked hopefully at Todd, not truly expecting a puppy that day, but we were newlyweds and he was in love and he was pretty wrapped. Then I handed her over to him, and she nuzzled his cheek and licked him. We walked out with a little white puff of a thing, I think she was two pounds. I named her Josie.

She was my baby. I loved her and I spoiled her.

Of course, Todd spoiled her too (her dark markings turned to pure white later).

When Riley was born, Josie lost some of her charm. Because I had spoiled her, she was very demanding. She didn’t give a rip that a baby had come on the scene. She didn’t bark, she screeched. REEEEEEEEET! REEEEEEEET! She’d look at you and sneeze her displeasure….all day long. She was a brat. But it was my fault, and I loved her, and life went on.

We moved to the Chicago area. Then we moved to Maryland. And she kept up her screeching.

And then Riley started having a really hard time.

And then we had a new baby.

Riley was screaming. Josie was screeching. The baby required what newborns require.

That dog. Every time I looked at her, she reminded me of how much of a failure I was. I could not keep all the balls in the air. Our family was in crises. I could not give everyone what they needed, least of all a 7 pound Peek-a-poo. There were some days she barely got a pat on the head. But she was part of the family. I couldn’t just give her away.

And then Todd’s dad told us about a woman he worked with, who was about to retire. She was looking for a little lap dog to spoil. And I could not not do it. We gave her away. We gave her to Roseanne.

I cried in the car on the way to her house. I cried in the car on the way home. I felt like a failure. A loser. A person who didn’t deserve a dog. But I knew I did the right thing. I knew she would have a good life. I doubted we’d ever have a dog again.

She was seven when we gave her to Roseanne. She made her transition to doggie heaven on Saturday, a few months shy of her 15th birthday.

I am so grateful to Roseanne and her family. My heart could rest easy all these years, knowing Josie was continuing what she came to this earth to do, be spoiled, and be loved.

Rest in peace Josephine, Dustmop, Peek-a-knees, Reeeeta.

We really did love you.

Posted in appreciation, dogs, Uncategorized | 11 Comments

Saying Yes

Posted on April 27, 2012 by Michelle O'Neil

Hello Asperger’s,

Thank you for allowing me to walk with a girl who is so sweet, she absolutely cannot see bad in anyone. Even people who have been mean to her. Thank you for allowing me to bear witness to this beautiful heart of hers. A girl who after being excluded wonders what she can do to help the person who did it. Because obviously they are in so much pain.

Dear PANDAS,

Thank you for allowing me precious time with my boy, to know him more, and to ease my own heart, making up for time that wasn’t spent “on him” when he was tiny. Thank you for providing me more opportunities to be kind when he is scared. Patient when he takes a long time to get his words out, accepting and supportive when he tics.

Thank both of you, Asperger’s, PANDAS, for all the learning. All the heart opening. All the extra love you have ignited in me and so many others.

I appreciate you.

Love,

MO’N

Posted in appreciation, Asperger's, PANDAS, Uncategorized | 4 Comments

Open

Posted on April 25, 2012 by Michelle O'Neil

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.

Posted in appreciation, homeschooling, PANDAS, Parenting, special needs parenting, Uncategorized | 9 Comments

How to Afford Camp

Posted on April 18, 2012 by Michelle O'Neil

Upon learning my kids are going to day camp for four weeks this summer, a neighborhood mother who is an acquaintance said, “Must be nice. We can’t afford camp.”

Now, I’m just going to let the fact that her kids go to public school fly. That she gets to send them off everyday without a thought. Instead I’ll be offering a public service announcement on how to afford camp.

1) Drive old cars. We bought one used, the other new. Both are over a decade old. We have not had a car payment in years.

2) Live close to where you work. Todd’s commute is short. Very little gas required.

2) Never go out. We spend very little on restaurants, and virtually nothing on fast food, due to special needs and special diets. Our booze bill consists of about $10.00-15.00 a month, my contribution to “porch night” with the girls. I drink about 1.5 glasses of wine a week with them. Two if I’m feeling wild. Hot Toddy drinks nothing. Ever. Neither of us smokes.

3) Trade babysitting services with a friend rather than paying for them on those rare occasions when you do get to go out with your spouse.

4) Have kids who are naturally unathletic. We pay nothing for soccer, tennis, lacrosse, you get the idea.

5) Don’t do your hair. I have high lights right now (which I got before my 25th high school reunion last summer and have had touched up once since then). Prior to that I got my hair cut maybe twice a year and did my own color at home.

6) Use the library.

7) Don’t go on big family vacations. We’ve taken two family vacations in the last ten years. One was paid for by my friend who died and left us the money for it. I would rather send my kids to day camp for four weeks than “vacation” because vacations with kids are rarely “vacations” for moms, and I need a break. Did I mention we homeschool?

8)Rarely buy clothes or new make-up.

9) Don’t ever buy soft drinks. Home or out.

10) Get your produce from a co-op. We spend $25.00 a week and get a huge basket full of organic produce which would cost three times as much if we bought it in a store.

11) Bring rather than buy. Todd packs a lunch every single day. He doesn’t spend a dime on cafeteria food or take out for lunch at work. Ever.

I know times are tough for many people. I understand that for some, camp is out of reach no matter how frugal a family is. For others, it is a matter of priorities. If Dad can buy a new motorcycle, there is money for camp. If Mom spends money each week getting her nails done at a salon, there is money for camp. For the most part, except in dire circumstances, we find money for what is important to us. I don’t begrudge anyone their motorcycle, their hair, their nails. Their junk food. Their new car every couple of years. I really don’t.

But spare me the “must be nice” about camp.

Posted in appreciation, homeschooling, Uncategorized, whoop ass | 16 Comments