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What Makes a Warrior Mom?

Fri, 11 May 2012 07:00:00 -0700

As I was contemplating Mother's Day and what it means to those of us who are proud to be called Warrior Moms, I began to think about what it really means to be a Warrior Mom, someone that fights every day to help our children reach their greatest potential.

So What Makes a Warrior Mom?

She is one that never gives up, but sometimes gives in.
She believes in the impossible and makes true the improbable.
She is tough as nails, but soft as a pillow.
She curses like a sailor, but prays like a saint.
She will uproot her family just to keep it grounded.
She makes crazy food taste like CRAZY FOOD!
She tells the truth.
She wants you to know the truth too.
And because of that she can't keep her mouth shut!
She researches and researches, then follows her heart.
She doesn't take no for an answer.
She finds someone that will help, always.
She is someone that will help, always.
IEP's don't stand a chance against her.
She will get up in the middle of the night just to make sure the kids are alright.
She will find that supplement, NO. MATTER. WHAT.
If they make it GF she will find it.
She is very afraid, but you would never know it.
Above all, she is love!

Happy Mother's Day to all my favorite Warrior Mother's, far and wide. You rock. Really. You do. Don't ever forget it. Without you, our future would be no where.

Stay Well.
Maryann DellaRocco

About the Author

Maryann DellaRocco is the mother behind the blog Matthew’s Puzzle, which chronicles her journey into the world of autism and biomedical interventions. She is married and has three boys, her oldest is on the spectrum. Follow her on Twitter: @matthewspuzzle.

5 Steps to Nurturing Your Marriage

Wed, 02 May 2012 07:00:00 -0700

My husband and I are coming up on our eleventh anniversary this June. Like many brides, I thought that on my wedding, I knew well the man I was committing my life to. What I’ve learned since that day is that every wedding is a leap of faith and that as much as I thought that I knew my husband well through our years of dating and engagement, it is the joys and challenges that life brings that really reveals the true nature of your partner.

Like other families whose child has been diagnosed with autism, my husband and I shoulder big responsibilities: finding the best therapies for our child, navigating the school system, planning for his future. We are both busy with our careers, our other daughter, obligations to family and community. At times, the responsibilities, fears and daily challenges that come with raising a child with autism have overwhelmed us, driven us to take out our anger and frustration on one other and turned us away from each other.

But fortunately, in these painful moments, we rise out of them and remember that we are partners in our parenting journey and in our life. We do our best to turn towards each other and offer support when one of us is feeling especially down or drained. What I’ve realized is that the man I committed my life to has more strength and vision than I ever could have imagined when I married him, and that it takes work, for any marriage, to come together to overcome obstacles…but it is very possible.

The Top 5 Ways That We’ve Been Able to Support our Marriage Include:

1. Give each other space to grieve: I wish that when my son had been diagnosed that there had been a social worker present to address the impact of the diagnosis on us as parents and to offer guidance. There wasn’t—and I know for most families, there isn’t. We found our own path to support but also each realized in our own time that we needed to allow ourselves to grieve. Our processes were different and it was important that we respected each other’s grieving process.

2. Make time to be a couple: We set a monthly date and try and go out twice/month when possible or meet for lunch during the day. Even when we’ve been really broke, we’d find a friend to watch the kids and go for a walk. Taking time away—even if you’re feeling down or exhausted—is so important to staying connected.

3. Have each other’s back: There are some weeks when I’m not on my A game, and some weeks when my husband needs to give attention outward and not do as much at home. We make sure that we pick up the slack for each other, knowing that we’ll cover for each other as needed. We don’t keep tabs of who’s doing more with the house or kids, keeping in mind that we are in partnership and both working hard towards the common good.

4. Get help: With all of the therapies that autism parents are juggling, you may think I’m crazy to suggest adding a therapy appointment, but we’ve found that going to couples’ therapy when we were really challenged helped us enormously. Before we had time to start therapy, we began by reading a book called Getting the Love You Want by Harville Hendrix. It was a game changer for us.

5. Make time, daily, to connect about things other than your child: Even if it’s 15 minutes of watching “The Daily Show” or a quick chat about a movie we want to see, we keep conversations going about your interests and passions. It’s so important to remember that your partner is your friend above all and that you have the ability to create a loving marriage that is nothing if deeper and stronger because of the challenges that you face.

About the Author

Gabrielle Kaplan-Mayer is the author of “The Kitchen Classroom: 32 Viusal GF/CF Recipes to Boost Developmental Skills.” She blogs about food and family at www.kitchenclassroom4kids.com

Legos, Pretend Play and Autism

Fri, 30 Mar 2012 07:00:00 -0700

Does your child have any item they truly love playing with? Something that isn't electronic? Something that they play with appropriately? What about pretend play? That has been a hard one for us. "Play," such a small word, but one that holds so much impact in development. We are all told how important pretend play is, but until your child doesn't do it, you really don't understand just how important it really is.

This weekend we had the most wonderful experience, one we really have been hoping for but hadn't happened as of yet. Matthew engaged in a long, uninterrupted, non-directed session of pretend play! He grabbed some small Legos StarWars figures and started to mess around with them. Next thing we know he is setting up scenes from the Legos Play Station 3 Star Wars game. His brother joined in and they were enacting battle scenes and making up their own action. I casually made mention of what they were doing and Matthew pipes up and says, "Mom this is pretend play. They are like action figures and it is so much more fun when you move them around." He even started to take them apart and put them back together. I was really impressed by this since he has a lot of problems with hand strength and fine motor skills.

I've always sort of loathed pretend play ever since we had an Occupational Therapist from his infant and toddlers years. She impressed upon me how very important it was for Matthew to learn how to play and she brought me this child's play garage. She left me with the assignment of teaching him how to play with this darn garage. (Oh how I hated the site of that thing.) Each day I'd take him over to the garage and with my hand over his I would guide him through the movements. Up the elevator, pump the gas, down the ramp. Repeat. But he never engaged, never even noticed the garage let alone the small car I held firmly in his hand. He didn't even notice me. It was a painful time and I hate to recall it. Things seemed so bleak back them. He never really developed any love for pretend play.

This past Christmas Larry decided he would get the boys a few Legos PS3 games to maybe introduce them to the video games so many of their peers played. He decided on the Legos StarWars games after reading so many good reviews. To try to heighten the excitement I also bought the Legos StarWars Advent Calendar. Matthew showed no real interest in it, but Nico loved each new figure or machine and begged me to help him put them together each morning. But once they got the PS3 game Christmas day, they were hooked. I was excited and happy to indulge them in their extremely normal infatuation. Our home has become overrun with light savers, storm troopers and Darth Vader masks, and little Lego StarWars men. And then this weekend happened. Matthew picked up one of those figures and a lightbulb went on. He just got it. He just finally understood that he could play all those great StarWars scenes out right there on the kitchen table. He, and Nico, even had to take a few figures out shopping and to lunch, clutching them in their fists like small treasures. I'm seeing a real attachment developing. The same sort of attachment other neurotypical children develop and I'm liking it. Oh, yeah, I'm liking it a lot. Maybe I'll find a child's garage next.

Stay Well.
Maryann DellaRocco

About the Author

Maryann DellaRocco is the mother behind the blog Matthew’s Puzzle, which chronicles her journey into the world of autism and biomedical interventions. She is married and has three boys, her oldest is on the spectrum. Follow her on Twitter: @mehmig.

*Photo Credit: Hellotjm_Photos on Photobucket.

Acceptance and Hope

Mon, 26 Mar 2012 07:00:00 -0700

It has been six years since my son, George, was diagnosed with autism. Like so many parents receiving this diagnosis for my child, my initial reaction was one of deep despair, matched with a sense of total overwhelm. It took me several months to sort through the myriad of therapy options to treat children with autism and to ultimately choose the healing path of diet, supplements and RDI (Relationship Development Intervention) that started to give my family a sense of hope. But what has taken me a longer amount of time to discover has been something less tangible and something that I have only been able to find by looking within; it is a deep truth about my son--that though his brain is often discombobulated and his gut and immune system struggle to function properly, he is nonetheless and always will be a perfect beautiful soul.

I remember a conversation that I had with my friend Andrea when we knew that George was not developing typically and while we were going through a number of evaluations. I felt completely ungrounded and uncertain of how to parent George, who seemed to be more and more lost in his own world. Andrea is the mother of a daughter (now in her late 20s) who has multiple disabilities and she is one of the most honest, authentic people whom I know. I shared my worries about George with her and shared my feelings of fear that I might never be able to connect with him. She encouraged me to embrace the quiet space of being with George without needing to talk. She shared with me that in the quiet space of being with her daughter, who also struggles with expressive language, that she learned to connect with her daughter’s soul.

This idea intrigued me. I knew that it was something that I could do. I started to hold George more the way that I had when he was a baby and I let my heart melt. I would tell him repeatedly how much I loved him. There were times when just being with him brought me to tears. During that same time, there were also countless hours where I nearly felt out of mind with frustration as his temper tantrums grew worse and his hyperactivity increased.

But I would find that quite space, even if it was just for a few moments a day—saying a morning prayer together thanking God for the new day, taking a nature walk or cuddling up and looking at books—when I would stop worrying about George and would just be with him. As I was able to do that more, I could feel his connection to me growing. I could feel him opening up to me and communicating with a smile, a gaze or a hug, even as he struggled to speak.

As our therapeutic work began to take root, I started to see the wonderful possibilities of George’s brain and gut healing. We have worked hard as a family in the last six years to remediate George’s autism and while he has made immense progress, he has ways to go in terms of learning to communicate and relate to others.

But what remains steadfast, despite whatever behavioral or academic challenges that we are working on with George, is my awareness of his beauty and worth and perfection, in simply being as he is.

Accepting that perfection is in fact about being imperfect, vulnerable, and flawed has been one of the hard earned gifts that I have earned in my son’s healing journey. In accepting him exactly as he is, I am better able to accept myself for all of my flaws and find energy for the work of helping my child’s brain and body heal to match his beautiful soul.

About the Author

Gabrielle Kaplan-Mayer is the author of The Kitchen Classroom: 32 Visual GF/Cf Recipes to Boost Developmental Skills. She teaches cooking workshops for kids and parents and for therapists who work with children with special needs, in person and via skype. You can reach her at www.kicthenclassroom4kids.com

Holding onto your Spoons

Mon, 05 Mar 2012 07:00:00 -0800

If you’re lucky, you have a few people in your life that can offer true guidance. I just lost one of the wisest women I’ve ever known – my darling mom. For the remainder of my life, I now have to ask myself, “What would mom say?” There is an old African proverb that relates the death of an elderly person to the loss of a library. I’ve read most of her books and perused her card catalogs of advice, but I know nothing will replace the sheer comfort and joy of hearing my mom’s words from her own lips.

With the physical loss of someone so dear, so valuable and wise, I find I look for wisdom in other places now. Trusting my gut instincts has always been invaluable, but for additional perspective, I look to my friend and homeopathic doctor, Cat Marshall. She’s even written a book about her son and the ADHD challenges that improved with, among many things, a gluten-free diet. Here’s one of the wisest things she’s ever told me.

Every morning before you start your day, go into your kitchen and grab a handful of spoons. You can do this physically, or as I do, metaphorically, as hauling a jangling bouquet of silverware in my handbag all day does little to improve my mood. Now imagine each spoon is a unit of energy, and all the spoons you have represent the total amount of energy you have for that day. Six spoons equals six units of energy.

Now, here’s the question. Who do you want to give your spoons to?

I figure I can comfortably grab about 10 spoons. So when my friend calls, as she does on a regular basis, to lambast her husband, am I going to give her my energy? No spoon for her, I decide. In fact, I cut the call short and continue working on my latest project. And when my dog throws up on my daughter’s bedspread? He’s got his tail between his legs and feels bad enough without me berating him. No spoon for Bailey.

Last Monday was a long day – lots of laundry, grocery shopping and cooking. That’s physical energy, so I gave it two spoons. A family member who is in perpetual turmoil called and for once, I decided to just listen for a short time, without investing my energy, thereby retaining my spoon. I felt kind of smart for having made this mental shift, until the next day when my computer sputtered and died and I gave away at least five spoons to an inanimate object. Do you ever feel like a dumb smart person or is it just me?

When I step back, I know that as a mother, most of my spoons will go to my kids for their bad days, wounded feelings and scraped knees. And I always know I’ll expend several spoons on asking them for the 14th time, to clean their rooms, stop fighting and put their toys away. So with childrearing a given, I got to thinking…to whom am I giving the remainder of my spoons? And why are there none left for me at the end of the day? The answer surprised me.

Now that my son is older, we’ve slowly introduced gluten back into his system to see where he is with it. After an 8-year absence from gluten, we gave it to him every third day and he seemed to be tolerating it well for a while. No digestive issues, but slowly and insidiously, his cognition changed, as did his loving nature and his ability to focus.

The last straw was when he went to a sleepover and ate a hamburger on a gluten bun. The next day played out like the most frustrating exercise in futility as he tried to finish his homework. Viola. There went all my spoons.

My husband, daughter and I witnessed the whole event and suddenly, everyone was on board. Now, weeks later, the gluten is gone and peace has once again descended upon our home. The white striations on my daughter’s fingernails are starting to clear. (Yes, this is the daughter who tested negative for any gluten intolerances). Everyone in our house has confessed, however grudgingly, that they feel far better and more focused on a gluten-free diet. I’m convinced that gluten stockpiles in our systems until it has to be leeched like poison.

So when my husband, an avowed gluten-lover (code for pasta, sourdough bread, beer and chocolate chip cookies) said, “Get rid of it all”, I breathed a huge sigh of relief. The truth is, for years we had a 95% gluten-free house. We kept a few stashes for my daughter and husband, but then, like a slow infestation of ants, it crept back into our pantry in greater numbers. After a thorough purging, my friends were happy for the box of gluten-laden crackers and treats they received, and I am overjoyed that balance is restored to my kitchen, my soul, my family’s diet and my ever expanding spoon collection.

This all-or-nothing approach might not appeal to everyone, but the fact is, we all need to assess what is draining our energy and what is promoting our health and well being.

Balance looks different for everyone. Committing to a gluten, dairy, soy-free kitchen is daunting and the best of us may fall off the wagon from time to time. But if I’ve managed my energy smartly, I still have a choice to make at the end of the day. I can use it to sprinkle bath salts into steaming water for a soothing soak. Or I can stir a restorative cup of tea with it. Or, I can whip up a batch of gluten, dairy, soy-free chocolate chip cookies and dig into the batter with my last remaining spoon.

About the Author:

Amy Waczek writes a gluten-free, casein and soy optional blog featuring a recipe index and resource guide at www.amysglutenfreepantry.com.

Elana’s Chocolate Chip Cookies

From Elana’s Pantry this delicious Chocolate Chip Cook recipe has been adapted to be Gluten, Dairy and Soy-free.

Prep time: 10 minutes

Total time: 20 minutes

Special equipment: mini ice cream scoop

2 ½ cups blanched almond flour
½ teaspoon kosher salt
½ teaspoon baking soda
½ cup grapeseed or light olive oil
1 tablespoon vanilla extract
½ cup agave nectar
1 cup chocolate chips (Enjoy Life brand is GFCFSF)

Baking Instructions:

Preheat over to 350 degrees.
Combine dry ingredients in a large bowl.
Stir together wet ingredients in a smaller bowl.
Mix wet ingredients into dry.
Form 1-inch balls with hands or use mini ice cream scoop.
Drop balls onto baking sheet and bake for 7-10 minutes.
Cool and serve.

*Makes 24 cookies

The Thinking Mom’s Revolution

Fri, 17 Feb 2012 07:30:00 -0800

People often ask why I still read up on biomedical treatments, research alternative therapies and attend autism conferences. Why do I still implement dietary intervention, biomedical supplements and homeopathy?

Well, the story doesn't end at recovery.

Think…..

There's still more work to be done AFTER recovery. I put in just as much work as I did when Mei and Min Min were at their most affected. Though of course, these days are much more relaxed, there’s more laughter and happiness now.

I’m a Thinking Mom…..

Without the diet and supplements, the girls will have indigestion, tummy pain, constipation and be susceptible to even more illnesses. Though they no longer present autistic features such as self-injurious behaviors, stimming, mood swings, speech delays and hyperactivity, their health leaves much to be desired. Between the 2 girls, we're currently dealing with low weight gain, low muscle tone, immune dysfunction, heavy metal toxicity, Helicobacter Pylori and persistent GI issues just to name a few. And that's AFTER recovery. Imagine how much more a typical Autism mum has to deal with!

This is why I still read, research and save up for autism conferences. I may have lost most of my biomed mojo, but I still try to keep up.

There’s a Revolution happening…..

Every mum of recovered kids I know are the same. We are terrified of regression. There are more challenges to be faced ahead, puberty for one - terrifies me. I don't know the future health implications of recovered children; will they be susceptible to chronic health diseases or psychiatric disorders? We’ve achieved managed recovery, now I want complete recovery. Is it a realistic goal? I don't know. But I expect, nay, demand excellence in everything I do.

Don't get me wrong; Mei and Min Min are fantastic! They are awesome in every possible way. But they are challenging, high maintenance and still a metabolic train wreck. But I don't mind, because our reality used to be 10 times worse.

Think…..

Though the war on autism is over in our home, I still feel like we're living in a war-torn zone. It will take time to rebuild this family, though we are well on our way. It will take even longer to recover physically, emotionally and financially. Though our initial investment has multiplied ten-fold in many ways. Recovery is a bittersweet victory.

Fight or flight mode? Nightmares? Grief? I still have them. Don't get me wrong, I am forever grateful my children are recovered from autism. But will they ever lose the metaphorical scars and legacy of all that is autism? Will I?

I’m a Thinking Mom…..

I will be forever haunted by autism, the scars run deep. I haven't had a good night's sleep for the past 6 years. Even when Hubby offers to do the morning school run and lets me sleep in, I'm still tired. You don't just recover from years of interrupted sleep, immense physical and emotional stress overnight. Couple that with anxiety, insomnia and general lack of self-care. Plus the weight of resentment, fear and sorrow of the past 6 years weighing down my soul. All that doesn't just magically disappear the day your child loses their diagnosis.

Why do I continue to advocate for autism recovery, biomedical intervention and alternative healthcare?

There’s a Revolution happening…..

Trust me, I don’t do this because I love it. I rejoice the day when I no longer have to smuggle in supplements, open up nasty-tasting capsules and chase my daughters around with a giant syringe. I do it because I must. Just like you do for your children every single day.

I do it because I dream of a better future for Mei and Min Min. And I want a better future for other children too. I demand better health for all our children. I am part of The Thinking Mom’s Revolution. Amazing mums (and dads) who are brought together by Autism. Join The Revolution at The Thinking Mom’s Revolution on Facebook now!

About the author:

Marissa Bagshaw is a mother of 2 children who are recovered from autism. She is an autism advocate and is a Rescue Angel for Generation Rescue. Her blog Spectrum Mum in Malaysia is inspired by her daughters' journey through autism. Please visit www.spectrummum.wordpress.com. She lives with her husband and daughters in Kuala Lumpur, Malaysia.

Cleansing Toxic People

Fri, 10 Feb 2012 07:00:00 -0800

Like many of you who are committed to keeping the level of toxins in your home as low as possible, I am conscious of only using green cleaners and buying organic produce and grassfed meat. Knowing that it is harder for my son who has autism to detox from the toxins that are so prevalent in our environment, taking this step helps to keep the toxic level in our home as low as possible.

But in the last few years of our healing journey, I have become aware of another area in which I need to consciously keep our toxic level low: toxic people. It might sound harsh, but you know like I do—supporting our children as we remediate their autism takes a huge amount of work and a huge amount of our energy. As a mom working hard every day to support my child’s healing and bring love and balance to our whole family, I’ve found that it is absolutely essential to keep “toxic people” at bay. My natural instinct is to be a listener and to give to others, so it’s been much more challenging to set limits with people than it was to toss out my old cleaning products and junk food.

But I’ve found some strategies that I hope will be helpful to you, too:

Identify: I describe toxic people as those people who suck your energy, and leave you feeling negative or anxious. Tune in to how you feel during the time you spend with a friend or family member. Are you energized or drained after spending time with them? If they drain your energy or bring your spirit down, they probably belong on your toxic list.

Plan an elevator speech: You may not be able to rid everyone on your toxic list from your world—some folks may be family members, neighbors, parents of your children’s classmates. But once you’ve identified them, you can plan to set limits around how much time you spend with them. When I first started setting these limits, I had prepared lines that I would say because it was hard for me to say no. “I’m busy working on my child’s therapy” is a simple line that you can use when that toxic person calls.

Prepare yourself: If you’re going to a gathering where some of those folks will be present, make sure to protect yourself. When I am faced with seeing a person who has cast doubts about my child’s healing or gives me pitying vibes, I imagine a bubble of light and love around me so that whatever negativity comes to me can bounce off of. It’s amazing how much this strategy works! I also make sure to identify positive people who will be at the gathering and make sure that I focus my energy with them. Speaking of which…

As you let go of toxic people, you make room to increase the amount of positive energy that you bring in from people in your life. It’s important to identify the people in your life who can:

Support you: If you’ve always been the “giver” in your family or circle of friends, it may be challenging to open up and let people know that you need support. Notice what people in your community lend listening ears, ask kindly about your child, and welcome you to share whatever feelings happen to come up for you in that moment. Supportive friends will boost your energy.

Lift your spirit and encourage you: There are also those special people who will not only listen, but whose presence will lift your spirit. These may be people who do not share your journey, but whom you can connect with from a place of common interest. It may be the woman lying on a yoga mat next to you, sitting by you at your house of worship or singing in the choir with you. We’re all so busy, but by giving yourself at least a small amount of time each week to put yourself in a positive place, you’ll be more likely to connect to positive people.

Understand your path: Finally, it’s been so important for me in finding acceptance, balance and even joy to connect with other parents who are living similar journeys to my own. Generation Rescue offers many opportunities to connect and learn with other parents. I hope you can join us at the AutismOne/Generation Rescue conference in May—I’ll be there sharing parent and child cooking ideas and would love to connect!

About the Author:

Gabrielle Kaplan-Mayer is the author of “The Kitchen Classroom” and the ebook “ABC Fruits & Veggies 4 Me!” She teaches cooking and coaches parents about cooking with their kids via skype. Sign up for her monthly e-news and follow the recipe of the week at www.kitchenclassroom4kids.com.

Proud Warrior

Wed, 25 Jan 2012 07:00:00 -0800

The other day I came across a blog by a mom who has no desire to be called a "Warrior Mom." She feels as if the term "Warrior" makes it seem as if she were at war with who her child is. She does not feel she needs to medically treat (as in biomedical interventions) her daughter's autism, instead she looks upon her daughter's disorder as simply who her child is and she wants to work with therapists to optimize her child's potential with out changing or "fixing" her child.

It is a lovely idea, but not one I can personally put into practice. I wonder if there is something less enlightened about me because I can't see the beauty in autism. Or if I'm simply more of a base personality. But I can't look upon autism as simply a difference in nature. No, I see it as a medical assault hoisted upon my son by a society filled with toxins, one that can, to some extent, be lifted. I am not at war with my son, on the contrary, I'm fighting daily FOR him. I've watched as he has improved and grown. Each time he makes a leap forward we see this illness lifting and his chances of a full life opening before him.

Before we actively went to battle against autism our son was not present behind his eyes. He made no connection with us or others. He made repetitive vocalizations and had no pragmatic language. His digestive tract was a mess and his cognitive abilities left us wondering how he would ever learn to take care of himself. But today we see a boy who's future has expanded beyond certain group home or institutionalization. He has dreams and when he looks at me there is life behind his eyes. A life he deserves to live. And when I look at him I see him, but better yet, he sees me!

I proudly wear the costume of Warrior Mom. In my mind she is primal, strong and fierce. She shows no fear, is steely eyed and brutal. She may not be elegant but she is true and she protects her children beyond any other. (Of course "she" could be "he" as I have seen many Warrior Dads too.) But unlike that other blog mom, I will always war against all things that try to injure or take my child. And like every other Warrior Parent out there, I'll get up tomorrow and do it again.

Stay well.
Maryann DellaRocco

About the Author

Maryann DellaRocco is the mother behind the blog Matthew’s Puzzle, which chronicles her journey into the world of autism and biomedical interventions. She is married and has three boys, her oldest is on the spectrum. Follow her on Twitter: @mehmig.

Celebrating the Year of the Dragon

Mon, 23 Jan 2012 09:00:00 -0800

2012 is the Year of the Dragon in the lunar calendar. A divine creature, the Dragon is a symbol of good fortune, power and superiority in Chinese astrology. The Oriental Dragon is a revered, mystical creature, unlike the beastly, menacing Western Dragon. So expect grand success and good luck this auspicious year.

Like all parents with children on the autism spectrum, good health and recovery for my children is predominant in my New Year's resolutions. This year, I also include taking better care of myself physically, emotionally and spiritually. Throughout the years in my children's recovery journey, I poured every fibre of my being into recovering Mei and Min Min. Until there was nothing left of me. I was drained, exhausted, TKO'ed. But it's ok, because that was where I needed to be for my children at that time. An Autism Mum. Or at least, the version of an Autism Mum I thought I should be.

I used to be an intelligent and successful career woman, before I hung up my shoulder pads and Filofax for granny underpants and snot-stained, shabby-mummy uniform. Is this what I turned out to be? This grumpy, grungy housewife with the sad face? It seems that every tear I've shed, every scream I've held inside, every grief-stricken memory showed on my face. I wonder if this is the face my children see everyday? The face my husband wakes up to every day? The poor fella. What kind of a role model am I to my girls? I'm trying my best to raise them to be strong, independent, confident young women. Not this beat-up, broken-down version of me. Time to get my yin in balance with my yang.

I miss the original version of myself. I long for the days when muffin tops were something I ate with glee, rather than a feature permanently lodged on my waistline. I remember being carefree, adventurous and fun. Not that I have anything to be ashamed of now. I'm now a wiser, nurturing and compassionate version of me. Though it came at a great cost, thanks to autism (though I am hard-pressed to thank autism for anything)

So, no more sad-mummy moments curled-up in a fetal position in my walk-in closet, covered in snot and boogers. No more mooching around the house in pajamas at 11am. No more dirty-haired scrunchy-ponytails and goat-toes (that's what Hubby calls my feet after having missed many months of pedicures). I thought I had to sacrifice every part of myself in order to do justice to my girls. I thought being a happy, healthy, attractive woman means that I am doing less for my kids. I felt spending time, money and effort on myself meant I wasn't as committed to their autism recovery as I should be. I thought wearing lip gloss and able to fit into skinny jeans means I’m less of a mum. Clearly, I was wrong. I'm trying to eat better (snort!) and taking fish oils, minerals, vitamins, probiotics and the almost-magical L-Theanine. Let the Zen begin.....

I went to Universal Studios in Singapore with my BFF recently. It was a good break for me, I got to catch up with my best friend, had some time away from kids, illnesses and the many realities that is my current life. I went on the Battlestar Galactica Cyclon ride; you should have seen me all trembly-kneed, hoarse from screaming and fluffy-haired coming off the roller-coaster. It was the scariest ride I have ever been on, peed-in-my-pants kinda scary! But 90 seconds of dips and turns at super-sonic speed is a walk in the park compared to parenting and raising 2 girls on the autism spectrum.

This year Mei, Min Min and I will be healthier and stronger. Good fortune will shower us for we have the Dragon on our side. Gong Xi Fa Chai and Happy Chinese New Year! May the Year of the Dragon bring much success, prosperity and good health to all.

About the author:

Marissa Bagshaw is a mother of 2 children who are recovered from autism. She is an autism advocate and is a Rescue Angel for Generation Rescue. Her blog Spectrum Mum in Malaysia is inspired by her daughters' journey through autism. Please visit www.spectrummum.wordpress.com. She lives with her husband and daughters in Kuala Lumpur, Malaysia.

Beautiful Speaker

Mon, 09 Jan 2012 07:00:00 -0800

“I got the award because I speak so beautifully”

– Mei, 6 years old.

Recently, Mei’s school presented awards to exceptional students in each grade for various scholastic excellence. Out of the 60 first graders, Mei received the award for Excellence in Reading and Speaking Expressively. This coming from a girl who was barely verbal 3 years ago. A girl whom everyone said had no hope, no future, no chance of a normal life. She proved them wrong.

*Mei and her little sister Min

When Mei started first grade recently, I was worried that she wouldn’t be able to cope in the private international school. Enrolling Mei in the Big School as I dubbed it, was the culmination of years of extraodinary work. Out of all of us, Mei worked the hardest and sacrificed the most. Would the Big School be the ultimate test of Mei’s typicalisation and normalisation?

After a few years of ABA therapy, Mei gradually transitioned to mainstream kindergarten. She went through three kindergartens until she found her groove in the last kindy. No aide, no special accommodations, no IEPs. But that was in a little kindy, not this Big School with its’ academically demanding British curriculum. First graders also seemed terribly sophisticated to me, will her social skills measure up? Will she make friends? Will she be happy?

I chose the Big School for its’ many excellent qualities. However, it is a strictly mainstream school and does not accept children with special needs or certain diagnoses. I omitted filling in the ‘Please tick if your child has the following diagnosis or disorder’ section, autism being one of them. I submitted the application and Mei was asked to sit for the entrance exam. If there was any suspicion of a behavioral disorder or developmental delay, the examiners would disqualify the child. Mei passed with flying colors.

Disclosure has its benefits, but for now I chose not to disclose. Not because I wanted to hide Mei’s diagnosis or her past. Rather, to protect her from the prejudice that arises from an autism diagnosis. Even though I have a piece of paper stating that Mei no longer has autism, she still encountered discrimination and unfair treatment in the past. One particular kindergarten took great delight in pointing out Mei’s deficits and faults, rather than focusing on her strengths and abilities, of which there are many. It was incredibly unfair of them to judge her for her previous diagnosis rather than for who she is now.

I can’t help but worry; would the teacher view Mei’s quirkiness as a red flag? Would the other students notice her difference? Would I accidentally give away the secret in front of a parent or teacher? Once, my husband lost his car keys at school. A parent found it and started waving it around asking whose key it was. When I spotted the giant autism ribbon keychain, I practically snatched it out of the mother’s hand, paranoid in case someone recognized the symbol.

I dread the day the Big School finds out about Mei’s past. I know the truth will catch up with us one day. But I will deal with it when the time comes. After all, everyone told us we couldn’t do it. We were told autism is a lifelong disorder. There was no hope, no recovery. Doctors sneered at me when I brought up the topic of biomedical intervention. The only things I was told I should do was medicate my daughter up to her eyeballs and institutionalize her. There were many things we were told we shouldn’t, couldn’t and wouldn’t do.

At the parent-teacher conference, Mei’s teachers only had glowing reports about her. She did well in all her lessons, joined in all the activities and genuinely enjoys school. Mei has lots of friends and even has a best friend.

To my comrade in arms, the fierce mamas and gladiator dads, keep on fighting. May 2012 bring hope, healing and recovery.

About the author:

Marissa Bagshaw is a mother of 2 children who are recovered from autism. She is an autism advocate and is a Rescue Angel for Generation Rescue. Her blog Spectrum Mum in Malaysia is inspired by her daughters' journey through autism. Please visit www.spectrummum.wordpress.com. She lives with her husband and daughters in Kuala Lumpur, Malaysia.

Baking & Ballet – Maintaining Family Balance

Thu, 05 Jan 2012 07:00:00 -0800

As the author of “The Kitchen Classroom: 32 Visual GF/CF Recipes to Boost Developmental Skills,” I frequently write about cooking with your children as a wonderful way to connect and communicate and build social experiences for our children who are struggling to create relationships. When I started cooking with my son George, 9, when he was four years old and we had just started the gf/cf diet, my daughter June was 18 months old and she wanted to be part of the cooking process with us. Many afternoons, George would stand on a step stool mixing batter with me and June would sit right on the countertop, taking turns dumping in ingredients and stirring with her brother. Cooking together gave me hope that despite George’s social deficits, he and his sister would be able to build a loving, reciprocal relationship.

Flash forward five years: as a family, we have been working hard on George’s healing process and have seen amazing developmental growth. We have a long way to go and are on a committed path and George and his sister do have a loving, playful relationship. And we still have those shared experiences of mixing up a trail mix or chopping up veggies for dinner, but I have also learned along the way how vital it is for me to make space for each of my kids on their own, giving each one of them mom’s attention for some time during the week.

As busy parents, we are pulled in so many directions and as parents who are supporting children who have special needs, we carry extra weight along the way. And yet, making time to step away from the therapeutic needs of my son and just be with my daughter has helped our family to find an important balance, which I have come to find is essential for the healing process.

On Saturday mornings, June takes ballet class and I always take her while my husband and George work on his therapy program. June loves dance and wakes up at 7am ready to go to class—even though it begins at 10am. The joyful experience of helping my daughter dress in her leotards, find her ballet bag and run into class smiling with her friends lifts my spirit and energizes me. I get to watch her routines at the end of class and see her pride.

I know that June counts on this Mommy time as much as I do. We return home, sometimes after doing a few errands, and make lunch with Daddy and George. In the afternoon, we might do something together as a family or she might have a playdate, which will give George and me a chance to try a new recipe together.

It is a simple ritual, but the intentional choices about how I spend time with my children has helped each one of them to feel just how much their mom loves being with them.

About The Author:
Gabrielle Kaplan-Mayer is a writer, cooking instructor and parenting coach. Visit her at www.kitchenclassroom4kids.com

He's Just a Bad Boy and I'm Just Another Bad Parent

Fri, 09 Dec 2011 07:00:00 -0800

I have never had strangers throw me dirty looks, accusing me of being a bad parent and my son of bad behavior, but I have heard of many autism parents having to deal with those reactions. Especially when they are out in public and their child starts screaming because they turned the wrong way in the mall or the restaurant was out of their favorite food. Matthew has always been pretty easy out and about, he did get upset if we drove home the wrong way but no one else was around so I never felt judged.

But recently I did feel judged. Let's just say I was made to feel as if I don't know how to parent my child, and worse, to feel as if my son is just a bad child; acting out and not listening. It is nearly impossible to explain to someone that your child's brain just doesn't work the same as average people. That for a manner another child can pick up if you mention it too them only a handful of times, it may take Matthew a hundred times to hear that same instruction before he can internalize it and do as expected. If you tell a normally developing child not to take food into the living room they may be able to generalize that statement to include drink or even someone else's home, whereas Matthew would need you to specify each and ever scenario, and he may still not carry out your wishes. He isn't being bad or rude, his brain simply doesn't work that way. And God forbid if he is overstimulated. You might as well forget getting new behaviors out of him them. His mind and body just aren't capable of understanding and self regulating during such exciting and stress filled times.

Yelling and belittling him doesn't help the situation, although it is what people may default to doing. It only makes him feel bad about himself. But so many people simply get angry with him instead of familiarizing themselves with his disorder and what kind of struggles he deals with daily. So here is some information on what it really means to have autism.

Psychiatric disturbances in autism include social deficits, social withdrawal, shyness, depressive traits, mood swings; flat affect, anxiety, schizophrenic & OCD traits; repetitiveness, lack of eye contact, avoids conversation, irrational fears, irritability, aggression, temper tantrums, and impaired face recognition. That is not your normal childhood problems and it explains why many of our children do require different and specific treatment, and unique understanding my loved ones and care givers.

Speech, language and hearing problems are pervasive and include delayed language and failure to develop speech, dysarthria , articulation problems, speech comprehension deficits, echolalia, word use and pragmatic language problems, sound sensitivity, mild to profound hearing loss, and poor performance on verbal IQ tests. These encompass so much of daily life, yet children with autism may not be able to do these things or do them well with consistency.

But autism doesn't stop there. The sensory abnormalities associated with autism are abnormal sensation in mouth and extremities, sound sensitivity, abnormal touch sensation or touch aversion, and vestibular abnormalities. This means that the normal everyday input their bodies receive from the normally mundane can be extreme for autistic individuals. Imagine trying to be considerate and compliant if you body was tingling unpleasantly, you couldn't tell where your body was in space and everything you saw, touched, heard, smelled or ate was unpleasant and uncomfortable.

Most of the above issues aren't visually apparent, but the motor disorders are and they are often the symptoms most people associate with autism. They include stereotyped movement such as arm flapping, jumping, circling, spinning, rocking, myoclonal jerks and choreiform movements. They have poor eye hand coordination, limb apraxia, and problems with intentional movements. They may have abnormal gait, postures, trouble walking, crawling or sitting, they could have difficulty chewing or swallowing and may have abnormal posturing or toe walking. So every single thing they tried to do with their bodies may be a chore for them. They may get frustrated and sad by their struggles.

The cognitive impairments with autism can be difficult to deal with and to understand. They include poor concentration and poor attention, poor short term, auditory and verbal memory, poor visual and perceptual motor skills, difficulty carrying out multi step commands, word comprehension difficulties, deficits in abstract thinking and symbolism, difficulty understanding others mental states, sequencing, planning and organizing. This can be particularly frustrating and requires a lot of patience, understanding and love from those instructing and caring for individuals with autism.

Our kids can have self injurious behavior, agitation, grimacing, crying and staring spells. They can be sensitive to light, have blurred vision, have poor eye contact and lack of joint attention. They have gastrointestinal imbalances ranging from mild to severe. Seizures are not uncommon. Abnormalities in neuro-chemistry can be present, as can immune dysfunction. Autism is truly a pervasive disorder and effects more than just their social behavior.

Sadly the list goes on, but I think the list has grown sufficiently long to make my point. Children and adults with autism think and experience differently than we do. Expecting that one can treat a person with autism like everyone else is misguided. One can have the same ultimate goals for our ASD children as we do for our neuro-typical children, but the route by which we achieve those goals will be different, convoluted, confusing and sometimes painful.

Instead of judging families and individuals dealing with autism, it would be helpful to everyone involved if you could arm yourself with knowledge and understanding. These things might not make it much better when the child bites you for no reason, or is talking uncontrollably, but knowing that they aren't trying to be bad and that this may be out of their control can help you deal with the situation. And it may keep you from giving someone that look that says " You are a terrible parent allowing your child to behave like that. And you child is horrible." Instead maybe you would give them the look that says " I understand this is tough and I'm here to help". Or better yet you might just walk up and lend a hand. Trust me, these families are dealing with more than you realize and witness on the surface. Their child is struggling with so much more than you can imagine or witness with just your eyes. Much of their behavior is out of their control, even though it seems like the most simple of tasks for other children.

Just keep in mind that you really can't judge a book by its cover, or autism by the individual's looks.

About the Author

Maryann DellaRocco is the mother behind the blog Matthew’s Puzzle, which chronicles her journey into the world of autism and biomedical interventions. She is married and has three boys, her oldest is on the spectrum. Follow her on Twitter: @mehmig.

The "Mommy" Rockstar Experience

Mon, 05 Dec 2011 07:00:00 -0800

The 80s Brit Pop and New Wave music era were a major influence in my teens. Though American Top 40 music is equally popular in Malaysia, the British music scene fueled my teenage fantasies. I saved my allowance to afford subscriptions to British pop magazines. I re-winded tape cassettes to listen to my favorite songs again and again. Posters of pop stars smoldered on my bedroom walls, their music were the anthems to my youth. I wanted to be a Bananarama and I wanted to marry a Duran Duran.

20 years later.....

MTV stars no longer inspire me, instead they’re replaced by the rockstars of the autism world. Renowned doctors, scientists, researchers, superstar moms and iconic dads. Names I've read in books, magazines and the Internet. Imagine my delight when the first autism conference I attended were wall-to-wall autism glitterati. Names baby, names!

Not star-struck, mind you. Merely admiration and respect for the people who motivated and helped me recover my daughters. I'm far too sophisticated and worldly to ever be so gauche, or so I thought. Me, star-struck? Until I attended my first autism conference that is. I blushed and stammered in the presence of the autism all-stars I met there, I even giggled like a schoolgirl. Later on, even when I was a seasoned autism conference attendee, when introduced to a famous author and mom extraordinaire, I just stood there awe-struck, speechless and smiling stupidly. Later on, I kicked myself for not thanking her for her inspiring work and contribution to the autism community worldwide.

I must confess, I failed high school science. No surprise there, I spent my nights bopping to Spandau Ballet and Tears For Fears in my bedroom instead of studying. My lack of knowledge in biology and chemistry left me woefully inadequate, a biomed newbie unable to grasp the basic concepts of autism biomedical intervention. My first biomedical conference left me dazed and overwhelmed. And I'm expected to master this crash-course in biochemistry? Biomedical conferences are all about educating and empowering parents, I was determined to succeed but I was in over my head. At that time, I thought Mei and Min Min's chances of recovery were very slim, saddled with a mum like me. But I forgave myself if I couldn't absorb or memorize everything that I learnt. That's where experienced biomedical practitioners on my daughters' recovery team come in.

I'm thrilled whenever I hear a renowned autism specialist comes to a neighboring country. I never pass an opportunity to learn from a world-class doctor, bringing my daughters closer to recovery and better health. If the universe has been kind enough to send these doctors so close to me, the least I could do is meet them halfway. No, I'm no biomed groupie, rockstar doctor stalker or conference junkie. Just a mum on a mission. I live halfway across the world from the hotbed of biomedical intervention, alternative healing and autism resources that is the USA. Constrained by geography, bureaucracy and the restrictions of my land, I made it work nonetheless. Autism mums are nothing if not resourceful and determined. After all, what's an ocean or two between me and a great doctor right?

There's an autism conference in Dubai soon. A couple of years ago, I would have jumped on a plane without hesitation. I'd be attending lectures and making new friends from the Middle East. Heck, I'd probably have accosted some poor unsuspecting camel in the desert and milked it! Alas, I have to juggle my time and finances wisely as I've got my eye on the next Autism One/Generation Rescue Conference in 2012. As a friend said, she’s getting a bucket to save the money to go next year. I too have a very big bucket to fill, for Chicago is a long way to go.

Now, I’m gonna crank up some old-school Duran Duran and shimmy to the righteous beat with my two recovered girls, courtesy of the rockstar doctors.

About the author:

Marissa Bagshaw is a mother of 2 children who are recovered from autism. She is an autism advocate and is a Rescue Angel for Generation Rescue. Her blog Spectrum Mum in Malaysia is inspired by her daughters' journey through autism. Please visit www.spectrummum.wordpress.com. She lives with her husband and daughters in Kuala Lumpur, Malaysia.

Working Through The Pain

Fri, 18 Nov 2011 07:00:00 -0800

“Your two girls are the equivalent of four boys!”

A good friend said this to me a few years back. I agree because it validated my feelings at that time. Mei and Min Min were not the passive, silent version of autism. They were the angry, hyper, out of control version of autism. Their tantrums were legendary, life was filled with many berserker moments. To say they were a handful is a major understatement, they were the equivalent of four angry, hyper boys.

We’ve had our share of manic trips to the hospital emergency ward for injuries, pneumonia, severe gastrointestinal pain and viral infections. But this is the first time we needed stitches. Surprising really, after six years with two formerly autistic, hyper, self injurious girls. Even when Mei was at her most severe, inflicting pain and harm on herself and others, we’ve never had to have stitches. She banged her head against the floor so hard I feared her little skull would break. Min Min has bitten us until she drew blood. But, no stitches till now.

Recently, Min Min dropped a drinking glass. Shards of glass everywhere, cutting a deep huge gash on her foot. I nearly passed out when I saw how much blood spurted out. Amidst the chaos and screaming (some of it mine), I had the presence of mind and remembered some of the things I learnt over the years. The biomed holistic autism mum mode kicked in. Instead of antiseptic cream, I used calendula cream instead and wrapped it in sterile gauze. Then I gave her a homeopathic dose of calendula before we rushed to the hospital.

The hospital was a blur of x-rays, talks with the ER doctor and pediatric surgeon regarding stitches and anesthesia. Pulling from the recesses of my frightened, overwhelmed mind, I managed to blurt out, “No nitrous oxide!” I rattled off a quick summary of her autism, metabolic issues and GI disorders. I insisted they contact Min Min’s pediatrician who knew her medical history, ending with “I want it to be on record that I am very, very concerned about anesthesia” in my shrieky, crazed-mum voice. The doctor looked at Min Min with skepticism and said “This is a girl with autism? She doesn’t look like autism to me.” I snapped back “Yeah, I did a good job. Now, what about sedatives instead?”

Not many pediatric surgeons would have done the procedure on a four year old without general anesthesia. But Dr G agreed to use a sedative first, but warned me that he may insist on general anesthesia if she wakes up and struggle. Min Min fell asleep after getting the sedative, but true to form, nothing can keep her down for long. Thank goodness, Dr G kept it together and completed the procedure without general anesthesia.

By the end, I was ready to kiss him for working through Min Min’s screaming, but I quickly soured to him when he prescribed paracetamol to manage the pain (commonly known as Tylenol in the USA) and antibiotics to prevent infection. I took it quietly, I just wanted to bring my baby home. Too wrung out to get into the ‘it lowers glutathione levels’ and ‘why give antibiotics if there’s no infection’ debate that I knew would ensure. I’ve got my arsenal of biomedical supplements and homeopathic kit on hand, I think I’ve got it covered.

The wound is healing nicely, no sign of pain or infection and Min Min's back to her usual cheery self. I am slowly getting over the incident, though I needed a few doses of L-Theanine, Valerian Root and homeopathic Aconite that night, all natural remedies for fright, shock and anxiety. The pre-biomed me would be reaching for Valium instead.

Min Min drew this picture the next day, when I asked her who’s the girl in the picture, she pointed to herself. I then asked why there was no bandage on her foot? She happily replied "That's because she's not in pain!"

About the author:

Marissa Bagshaw is a mother of 2 children who are recovered from autism. She is an autism advocate and is a Rescue Angel for Generation Rescue. Her blog Spectrum Mum in Malaysia is inspired by her daughters' journey through autism. Please visit www.spectrummum.wordpress.com. She lives with her husband and daughters in Kuala Lumpur, Malaysia.

Birthday Party Funk

Wed, 09 Nov 2011 06:00:00 -0800

Birthday parties used to be sensory hell for Mei, she couldn’t tolerate the overwhelming attack on her senses. The crowds, loud music, clowns, magicians, bouncy castles, even lighted candles were a sensorial attack. The few parties we attended were miserable failures. After turning down several party invites, the invitations dwindled down to nothing.

Even the girls’ own birthdays were a disaster. There are no GFCF bakeries in Malaysia, so I baked and decorated GFCF cakes which usually tasted as bad as they looked. We invited the girls’ one remaining friend and sang Happy Birthday in our quietest voice to the accompaniment of Mei’s shrieks and Min Min’s sobs. By the end, I would be close to tears.

Mei and Min Min’s birthdays were always a sad reminder to me, of how life took such a hideous turn. A week leading up to their birthdays, I would fall into a deep funk. Dreading the ‘party’ that I had to throw, knowing it would be anything but joyous. To be reminded once again of how autism viciously ripped our lives apart. I had imagined throwing fun theme-parties for my daughters, what they got instead was a lopsided, unpalatable cake and misery. Hubby and I compensated by giving lavish presents to the girls, all quickly broken or left untouched because they didn’t know how to play with them appropriately.

As the girls overcame their sensory disorders and recovered from autism, they were finally able to enjoy birthday parties. Though thrilled that they were invited to parties again, I worried about dietary infractions. Mei and Min Min can sniff cake from 20 paces, to them the birthday cake was the highlight of the party. The girls are no longer on a strict diet, but neither do I want to load them up with gluten, casein and sugar. Luckily, in Malaysia ‘jelly cakes’ are just as popular as the conventional baked cakes. They are glorious creations of jelly layers made from agar-agar, coconut milk and flavored with pandan leaves. There are many variations of jelly cakes but Malaysian-style jelly cakes are generally gluten-free, casein-free and low in sugar. Jelly cakes are also popular in Vietnam, Thailand, Singapore and other asian countries. Unfortunately, being the gluten snobs that they are, Mei and Min Min would wail in dismay when they see a jelly cake.

The girls can now enjoy their own birthday parties. For Mei’s 5th birthday, I planned a small, intimate party in a children’s spa, complete with mini pedicures, manicures and hair braiding. The joy I felt when Mei blew out her first birthday candles in 5 years was priceless. The pleasure on Mei’s face surrounded by her friends was pure delight. For Min Min’s 4th birthday, we threw a fairy princess-themed birthday party complete with dress-up box, crafts corner and face-painter artist. Seeing the children in sparkly dresses, fairy wings, homemade tiaras and adorned with glittery tattoos was sheer happiness. When Mei turned 6 years old recently, we decided to throw a Junior MasterChef-themed party. The children measured, chopped, stirred and baked, it was absolutely brilliant!

My friend asked whether I baked the cake again this time. After baking nine abysmal GFCF birthday cakes in the past 6 years, it was time for me to hang up my apron. To order a beautiful and delicious cake from a bakery was pure luxury. No stress, no mess. The girls are able to tolerate a moderate amount of gluten and casein now, but we still give lots of digestive enzymes beforehand. No jelly cakes for Mei and Min Min, yet!

In the past 2 months, Mei has attended 4 birthday parties. That’s 3 more than she’s been to in 3 years since autism entered our lives. Birthdays are no longer tragic reminders of what we have lost, instead birthdays are now occasions to celebrate and appreciate what we have regained.

About the author:

Marissa Bagshaw is a mother of 2 children who are recovered from autism. She is an autism advocate and is a Rescue Angel for Generation Rescue. Her blog Spectrum Mum in Malaysia is inspired by her daughters' journey through autism. Please visit www.spectrummum.wordpress.com. She lives with her husband and daughters in Kuala Lumpur, Malaysia.

Halloween Without The Horror

Mon, 24 Oct 2011 06:00:00 -0700

Let me just warn you...I love Halloween. Not the gory Freddie Kruger stuff with gross out bloody masks with all manner of hardware and veins popping out, but the whimsical Halloween with witches, ghosts and caramel dipped apples. My kids were early converts to my love of All Hallow’s Eve, but my husband is a hold-out because of all the aforementioned gore. Each year, he turns into the Halloween version of the Christmas Grinch. So each year, to seduce him over to the (highly decaffeinated) dark side, and to thrill my kids, we throw an old fashioned Halloween party.

Complete with a bean bag toss, eyeball-in-a-spoon relay race and a tootsie roll toss, we decorate brown lunch bags with washable markers, put a costume on the dog (yeah, I know...borderline animal abuse) and decorate silky gluten-free cupcakes with all manner of Halloween paraphernalia. Sugar doesn’t sit well with my kids, but I do surrender to it a few days each year and give them a little more latitude than usual.

Now, not everyone is up for hosting a party. In fact, at the end of the party when my yard is littered with candy wrappers and blown-out whoopee cushions, I always promise myself that this year is the last. Then, as with childbirth, all the mess and hassle become a faded memory and I forget how organizing teams of children into some semblance of a line is akin to herding butterflies, and I do it all again, year after year.

Parties, however, can be socially stressful, overwhelming and confusing. So I suggest down time with your family this Halloween season. Sew or buy a couple bean bags and see how far apart you can toss them before they get dropped. My family did this for over a half hour. Under the leg, left-handed, right-handed, catching it in our shirts. It got us all outside and working as teams. No TV, no computer, and no fighting.

Duct tape a large strip of brown paper over your dining room table and create the best Halloween scene you can with washable markers. Scary houses, hooting owls and witches flying over a full moon is a creative way to keep a project growing and changing.

Or dig through your Halloween decorations for a bin or plastic pumpkin and toss tootsie rolls into them at a distance. Paint mini pumpkins together as a family, or, my kid’s piece de resistance - stage your own dress up party.

And when your kids tell you they are hungry, give them something orange and delicious. My family’s most favorite soup (yes, my kids eat it), is Butternut Squash Soup made with homemade chicken stock. Bone broths are a wonderful source of nourishment for kids with autism who are typically low in calcium. Pair the broth with a roasted butternut squash and you’ve got a bit of a masterpiece, in my humble opinion.

For dessert, you can use an arts and crafts paint brush to paint semi-sweet melted chocolate into inexpensive bon bon molds (from Michaels), for Gluten, Casein-Free Pumpkin Bon Bons. If pumpkin is not your cup of tea, fill the bon bons with your favorite fruit jam. Decorating cupcakes is another family favorite. Using your favorite GFCF mix, or this wonderful chocolate cupcake recipe from Elana’s Pantry, decorate using strawberries, meringue cookies (from Trader Joe’s) and gummy worms for Creepy Cupcakes. And to make sure all the treats your kids eat are gluten-free, check out Alison St. Sure’s list of Gluten-Free Halloween Candy from her Sure Food Living blog, as well as her list of allergen-free candy.

Halloween can be a loud, scary event in the life of your child, but you can bring a bit of whimsy back by adapting it to your kid’s particular needs and tastes. And if their tastes run to a rich, yet healthy meal, try this Butternut Squash soup for the entire family. If they turn their noses up at it, bride them with a Creepy Cupcake.

Gluten, Casein, Soy-Free Butternut Squash Soup

Prep time: 15 minutes

Total time: 1 hour, 5 minutes

Yield: 4-6 servings

Special equipment: Immersion blender or stand blender http://astore.amazon.com/amysglufrepan-20/detail/B000GHF3V8

1 2 1/2 - 3 lb. butternut squash, quartered lengthwise, seeds removed

2-3 T olive oil, divided

1 medium yellow onion, chopped

4 c. chicken broth

1-2 tsp. salt, divided

grinding of fresh pepper

fresh chives as a garnish, optional

1. Preheat oven to 400 degrees.

2. Place butternut squash quarters on roasting pan, skin side down. Drizzle with olive oil, sprinkle with salt and roast in oven for 50 minutes until fork tender. Remove and set aside until squash is cool enough to handle.

3. Meanwhile, heat remaining olive oil in soup pot and saute onion and a dash of salt over medium heat until translucent, about 8 minutes, stirring frequently.

4. Add chicken broth to pot. Scrape all flesh from squash and add to pot. Bring to a boil and simmer for 5 minutes.

5. Add 1 tsp. salt and a grinding of pepper and puree soup in batches in a blender (be careful not to overfill), or use an immersion blender to puree soup in the pot. Taste and adjust for seasonings, and sprinkle individual servings with chives for garnish. This soup is even better the next day and can be easily doubled.

Amy Waczek writes a gluten-free, casein and soy optional blog featuring a recipe index and resource guide at www.amysglutenfreepantry.com.

Homework with Autism

Wed, 05 Oct 2011 07:00:00 -0700

Now that school is back in full swing Matthew has been getting homework. Last year they had very little homework, but now that he has advanced to 1st grade, homework is four nights a week with a spelling test every Friday. Things can get a little crazy here in the evenings. Like most other families, we have lots to do each night, and fitting homework in has been a challenge.

Because 1st grade is significantly more demanding than kindergarten, Matthew is extremely over stimulated by the time he gets home. We need time for him to unwind and gain some self-control. But, on the other hand, we often need for him to get homework and dinner in before some of his therapies which end just in time to get ready for bed.

One of our first strategies was to eliminate TV and computer when he arrives home. This is a little tricky because we have two younger boys that enjoy TV and computer, and because I'm trying to watch all 3 of them, make dinner and help with Matthew's homework, it can get chaotic in the evenings. But those types of electronics take his stimulation to new and hectic levels, so off they go.

We have also tried having him go into a separate room, close the door and relax for a few minutes until he feels composed again. This usually does not last for more and a few minutes, but he gets to decompress from his day.

Then we set priorities for the evening. If he has only a few simple words to write I will have him sit at the table and begin his homework while I get his dinner ready. Then he will eat and we are out the door to therapy. If, instead, he has more intricate homework, he will eat first and if time permits do some homework before leaving for therapy. He will complete the work once he gets home.

This presents its own problems and rewards. By the time he gets home our youngest child is in bed, and my husband is free to be with our middle son, leaving our home distraction free (almost). The problem is that he is tired after a full school day and therapy, which is often very hard work. To make him then concentrate on additionally taxing work that requires fine motor skills can push him to his limits.

Some would say to simply push his bedtime back, but we have found that he does not sleep well and usually gets up even earlier than normal, and he is an early bird already. We're still trying to figure it all out, but he is a bright kid and, well, we just have to get it right, don't we?

Stay well.

Maryann (Tribal member since 2005)

Stay well.

Maryann (Tribal member since 2005)

Maryann DellaRocco is the mother behind the blog Matthew’s Puzzle, which chronicles her journey into the world of autism and biomedical interventions. She is married and has three boys, her oldest is on the spectrum. Follow her on Twitter: @mehmig.

It's Okay to Make Time For Yourself

Mon, 26 Sep 2011 09:00:00 -0700

I am officially obsessed with my hair right now. I have naturally curly/wavy hair and for all of my adult life I've worked to smooth those curls out and have nearly straight locks. Well recently I found out about the curly girl method and have actually been trying to nourish my hair into beautiful curls. There is this whole science associated with successfully treating curly hair involving removal of bad ingredients, adding nourishing products, using said products in the correct combination, determining whether your hair likes protein or not and conditioning appropriately, applying coconut and other healthy oils, even the meteorological dew point! Sounds a little like biomedical treatment, doesn't it? (And don't baulk about the meteorological connection to biomedical, just look at how we treat parasites - following the Luna cycle.)

While we were on vacation last month my husband laid down the line and said I wasn't allowed to research autism or Alzheimer's, both of which have been consuming me. So being the crazy, researching autism mom that I am, I started researching the curly girl method. I decided to work on making myself feel and look good. I'm only bringing this up because although it is extremely important to do the research and be prepared when treating your autistic child, you need to do something that makes you feel good. For me, research has become such a part of my daily activity that I've even incorporated it into my relaxation. It may not be the best idea, but baby steps, right? Baby steps.

So much of my life has revolved around reading the latest research or buying supplements. I kind of love buying supplements now. I see them as these awesome little packages that improve our overall health and wellbeing. Pretty much my whole family takes some supplements even if it is only a quality probiotic or aloe juice. Now I research hair care products and scour the aisles looking for organic products that fit the method.

You don't have to do what I do, but you do have to do something. Something for you, that just makes you feel good. If you can’t fit much in during the day try small things like a few pushups, finding a funny blog to read, try a new recipe, buy some new nail polish (non-toxic of course), grow an indoor herb garden, start a simple collection. When you start to make those things habit, expand the time commitment if you can. Make time for yourself. Take a class like knitting, sewing, cooking or karate, join a book club, find some other autism parents and have a progressive potluck dinner, make cool holiday decoration - start early. You need to do this because you can't be productive if you are running on empty.

And you are running on empty, aren't you? I know I was. I always felt so guilty if I did anything for myself. I was fine letting my husband do personal things, in fact I encouraged it. I could see the toll all this was taking on him, but me? No, I didn't count. I could go without. I even felt guilty if I bought new underwear! That money could be used for therapy or doctors’ appointments. Anything other than me. But who was I helping really? I was miserable, unpleasant, and just so tired.

Don't feel bad if you aren't "there" yet. It took me a very long time and lots of soul searching before I realized my children deserved a better me. All this other stuff I was doing, although very important, didn't make me the kind of mom I wanted to be for my kids, and that is what motivated me to make some happiness for myself. It sounds so easy doesn't it? Just decide to be happy. And in a way, that is exactly how easy it was. Whenever I start to feel bad or melancholy, I stop myself and tell myself I won't let this happen. My kids should be happy and for them to be happy, I need to be happy. There, it is done.

Stay well.

Maryann (Tribal member since 2005)

Maryann DellaRocco is the mother behind the blog Matthew’s Puzzle, which chronicles her journey into the world of autism and biomedical interventions. She is married and has three boys, her oldest is on the spectrum. Follow her on Twitter: @mehmig.

Running Barefoot: You Are NOT Alone

Tue, 02 Aug 2011 11:30:00 -0700

Life never takes a break. Sometimes I imagine that since we have autism in our lives, then the rest of life should take it easy on us. But that is never, ever the case, is it? Life always seems to have something up its sleeve.

I’ve been a bit out of touch lately because life has been kicking us pretty hard. We’ve been suffering some nasty viral infections, one that sent our youngest to the ER, and cancelled our middle son’s birthday party. I felt particularly bad about that last one since he always seems to get short-changed being the sibling of an autie. The virus even knocked my husband for a loop.

Matthew was evaluated at the end of the school year and it was realized that he needs adaptive physical education next year. Although this was no surprise to us, having a formal, written report that spells out his physical deficiencies in black and white is always particularly hard on me. It takes me a few days to recover from those body blows and get my brain wrapped around the information; eventually allowing me to process and sort the findings so that I come up with a reasonable game plan.

Then a close family member started showing serious signs of dementia and we, as a family, realized we needed to step in and make some serious decisions. All of this has rocked our world and added layers of disappointment and struggle to an already trying life.

I always marvel at those people that seem to create drama in their lives. I’ve known several “Drama Queens” and “Drama Kings” in my life, and even before I knew what autism was, I couldn’t understand why someone would consciously make those types of bad decisions. Didn’t they know they were just setting themselves up for heartache? But they seem to thrive on that, while I, on the other hand, loved a calm life. I certainly didn’t look for drama!

Well, I don’t have calm now. I don’t know about you, but I usually live with a nervous energy in my belly. Often I get the feeling, late at night, as if I want to run the dark streets. Simply get out of bed, walk out the front door without shoes and just start running right down the middle of our street with my nightgown slapping behind me. Always with the plan to return home, but somehow a desperate attempt to shake these demons from me. And although I am a firm believer in biomedical interventions, I’ve seen the successes with my own eyes, in fact I have one asleep right upstairs; I still feel impotent and ineffectual at times. I often feel lost and confused; as if I’m a child playing at a grownups game.

I am a Catholic, and I believe in God, but sometimes my desire to recover Matthew is so intense that I wish for a place to lay my soul bare in front of God and beg Him for my child. The feeling is often so great that I feel as if I can’t contain it. On those days I dream of running on the dark streets.

You may ask why I decided to share this with you. Why would I tell you this instead of giving you a must needed pick-me-up? Although I like to think of myself unique, I’ve come to realize my feelings are probably pretty similar to the feelings many of you have. Maybe you reflect on them, or maybe your push them aside. Maybe you think you are alone and are scared to feel this way. Well, you aren’t alone, because you are just like me and I’m just like you. We share all of this.

We are a community, and although we may never meet, it is always good to know you aren’t alone. To know someone else is dreaming of a midnight run, in bare feet, down dark streets. To know we are your tribe.

Maryann DellaRocco is the mother behind the blog Matthew’s Puzzle, which chronicles her journey into the world of autism and biomedical interventions. She is married and has three boys, her oldest is on the spectrum. Follow her on Twitter: @mehmig.

Be Here Now

Thu, 07 Jul 2011 07:00:00 -0700

Our nightly ritual involves ordinary magic. Our family gathers at the dinner table to share stories about the day. We clear dishes, brush teeth, read bedtime stories, sing “Edelweiss” and “Memories” and my husband and I kiss our two boys good night.

Tonight, however, my older son Ian is a little restless and lingers in the living room. To sooth himself he hums and rubs his hands rhythmically against the wall and carpet. He eventually settles down on the couch, flopping side-to-side, and after an hour falls asleep. Thirty minutes later, I help him walk sleepily up the stairs to his room and onto his bed, but he won’t lie down. Normally, he’d plop right down and settle in for the night. Something isn’t right.

He starts to cry.

“What is it, honey?”

Big tears stream down his face. He grimaces, and then I hear the reflux come up. He cuts it off with a hard swallow, over and over again. His brow furrows and he turns to me with pleading eyes that say, “Mom, please make it stop.” It’s bad tonight.

“Sweetie, let me help you.”

I crawl onto his mattress that lies flat on the ground and pull him close, positioning him in my lap, facing away. This is what I call the “burp” position. I’ve become creative through the years, as he’s way past the stage to burp over the shoulder. He then pees through his diaper all over himself, the bed and me.

Ian is eight years old and he has autism. Not Asperger’s or high-functioning autism, but the type that comes with seizures, a hyper-sensitive immune system that responds to God-knows what, gastrointestinal problems including, at times, severe reflux, and pee and poop that usually miss the toilet but hit the diaper. His sensory systems get overloaded easily and he has no spoken language…yet.

Even though he can’t tell me with words what he’s feeling, in this moment he is telling me something is not right.

Tears stream down his face from his squinted, reddened eyes. He moves his hands around his body, poking and pushing around his tummy. He is in pain. Streams of snot flow from his nose and his face blooms with red blotches. If I don’t act quickly, he’ll vomit.

I give him a dose of Benedryl and aloe juice. Within twenty minutes, Ian and I are in dry clothes and his bed is stripped and remade with clean sheets. The tears stop, his nose clears up and he starts to relax. He lies down, easing into sleep. The disaster appears to be averted.

I go downstairs and listen to my son’s breathing on the monitor and watch an episode of The Ellen DeGeneres Show for my daily dose of laughter. What’s that? I hit pause on the remote. Damn, there’s that familiar sound. The bed sheets rustle with the repetitive movement of his body, his breathing changes from a deep rhythm to shallow gulping sounds. I run upstairs, taking two at a time and enter his room.

Ian is rigid, with clenched fists arms pressed against his chest. He’s in the middle of a seizure. His eyes stare, open wide, and he’s choking on reflux. I sit him up, which is quite a challenge in his rigid state.

I whisper in his ear, “Sweetheart, Mommy’s here. I’m here with you.” I hold him gently, breathe deeply and remain calm. No more than fifteen seconds pass as I feel his body relax into mine. He takes a deep breath. This episode is over.

But his tummy is in turmoil. Somehow the air in his tummy is connected to his seizures. If I don’t help him burp, the seizures will continue through the night. I press on his tummy, just under his ribs. I feel the rumblings with my fingertips and hear that familiar sound of gas traveling up the esophagus and out it comes—a belch deep and loud, like it’s coming from the depths of his intestines. Unfortunately, I don’t get them all out. He’s exhausted from the seizure and just wants to lie down.

I camp in Ian’s room. I layer blankets on the carpeted floor to provide cushion for my 45-year-old body. I touch his cheek and say, “Sweetie, I’ll be right here lying next to you. Let me know when you need me.”

We pass the night together in the darkness of his room. The seizures resume with an eerie rhythm as they come hourly. I remain calm and we both sleep between seizures. He knows I’m there. I repeatedly wake to the sounds of his shaking and choking. Even from a groggy sleep, I take only a few seconds to move into action. He has one last seizure after sunrise. We sit together as I hold him, comfort him and love him. It’s what I do. I’m his mother.

Later that day I pause as I pass Ian’s room. Light streams in through the windows. I notice the blankets folded neatly in a pile, patiently waiting for another night. Two years ago, I might have wept, overcome with the fear of more seizures. But today I take a few deep breaths and feel a rush of gratitude that Ian made it through the night and that I was there by his side.

Evening comes and I sit on the couch enjoying the stillness. Ian quietly sits down next to me leaving almost a foot of space between us. His hands are gently crossed on his lap, right hand holding his left thumb in a reverent pose. His body relaxes into the couch cushions, allowing them to support his weight. In this moment, he’s at peace.

My hand slides across the leather, palm facing up, extending an invitation. I wait, without expectation. A few moments later Ian’s hand reaches to connect with my hand. I feel the meaty softness of his palm as his fingers grasp around the base of mine. A smile comes to life across my face and warmth expands out from the center of my body.

I feel him say, “Mommy, be here now.” It’s more beautiful than any words ever spoken.

Author Bio: Diane Hunter writes on her blog, www.afterautism.com/blog and is working on a memoir about her son. As a mind-body coach, Diane helps clients find freedom from their pain. She offers a unique experience with horses that teaches the power of non-verbal communication to overcome fears, build trust and establish true leadership.

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