Wednesday, May 25, 2016

Kicking the White Sugar Habit + Chocolate Date Mousse Recipe

This post is sponsored by Lorissa's KitchenLorissa's Kitchen premium protein snacks are made from 100% grass-fed beef and antibiotic free pork and chicken with no preservatives, hormones and no added msg. 11 grams of protein in every serving makes Lorissa's Kitchen the perfect high protein snack. Thanks for supporting sponsors on TLM!

This is my third post in my health and workout series. (Here are posts 1 and 2). As I stated in March I'm on the final countdown to the big 4-0 this year and am doing a series of posts focused on health and fitness, from the perspective of someone who is not a health or fitness expert. This is not about weight loss or achieving a "bikini body." After spending a year and a half with debilitating back pain and recently returning to pain-free living I have a new found love for my body and feel grateful for all it allows me to do. Honestly, working out at all feels like such a privilege to me these days. The one goal is do have to be able to do 10 pull-ups by my 40th birthday. Thanks for following along!

I have no problem eating healthy meals. Gimme all the greens and vegetables and nuts and lean meats and olive oils and proper proportions! When it comes to cravings I'm not about the unhealthy meals like hamburgers, pizza or fried food--I'm all about the treats and the sugar! I want chocolate or ice cream, ideally both, and I want it now. Come bedtime I turn into a raccoon and start shuffling through the cupboards like the sugar junkie I am looking for my next hit.

While I've always had a sweet tooth I trace the uptick of this sugar habit to those early baby days with PSP. In between all the crying and trying to get my baby back to sleep, I found myself binging on Dove chocolates as if was the secret to happiness. Which, to be fair, at the time it was. My days were long and tiring and the only break I could give myself day in and day out came in that little blue foil wrapper. 9 years later and I realize that I have now trained myself to look forward to these daily treats where I chill out during nap time and eat something sweet. It's definitely a habit.

Listen, no ones perfect, we all have our vices and mine happens to be white sugar. I don't feel the need to completely eliminate white sugar from my life, but I do feel the need to loosen it's grip on me a little. I have a treat in some form everyday and I want to change that. Additionally, I feel like a huge hypocrite as a while ago we instituted 'treat days' on Wednesday and Sunday with the kids so that they would get out of the habit of expecting and eating sugar everyday. Meanwhile, mom and dad ride the train to sugar town each and every day when they're in bed or at school. It's a little ridiculous.

So today I'd like to share my best tips for cutting down on white sugar. I'm not a health expert--which kinda makes in more legit because this is not my job and I actually find this hard to do!--but these tips have been really helpful to me in the past and will hopefully be helpful now. Good luck to us all.

3 Strategies to Help Cut Down on White Sugar

1. Make it a goal. As in, write it down or tell someone else that you're cutting down, or temporarily eliminating sugar, so that you're accountable. If I commit to even going 1-2 weeks without sugar, I crave it less and less on a daily basis. Once I cut down my sugar intake, even a little bit of sugar starts to taste too rich and I'm much more content having a treat every other day or every few days.

2. Try a different sort of treat. I like to "treat" myself. Most often that treat is sugar related, because ice cream, chocolate, all of that feels special. Therefore if I have something else that feels special but is not sugary, I still feel treated. My husband could happily eat a PB&J everyday and feel satisfied. Not me. I want good, delicious food. It doesn't have to be fancy, but as long as it feels a little elevated from say, kid food, it helps a lot to ease the craving for something else special and treat-like. So a nice salad, my favorite homemade salsa recipe, and a snack plate that is filled with delicious and healthy choices is one way my treat feels like a treat.

Berries, nuts, and Lorissa's Kitchen premium protein snacks are some of my favorite alternatives to a sweet treat. I especially love Lorissa's Kitchen for providing more protein in my diet right now as that's an important element in building more muscle. There are 11 grams of protein in every serving and 4 delicious flavors to choose from including Korean BBQ, Ginger Teriyaki, Sweet Chili and Szechuan Peppercorn.


3. Whole Food Based Desserts. This last one is tricky. We've all tried those whole food treats where someone claims "these taste exactly like real cookie dough bites!" Uh, no they don't. I'm sorry but almond flour, honey and bee pollen are never going to taste like flour, sugar and butter. They just don't. BUT whole food based desserts can still be delicious and have a great flavor all their own...just don't expect that Nestle Toll House taste. Of course these desserts still have sugar--just not refined, white sugar--and should still be eaten in moderation.

I recently tried a Date Based Chocolate Mousse and liked it so much I wanted to share the recipe. Original recipe here. There are only 4 ingredients and the results were surprisingly good! (And rich.)

1 can Coconut Milk (I used lite the first time and liked the results)
1/3 cup Cocoa Powder (I bought this raw organic cocoa powder)
1 cup (approx. 18) dried and pitted dates
Dash of vanilla

--Refrigerate the can of coconut milk overnight so that the solid separates from the liquid. Turn the can over and open it and scrape out all solids. Put in a bowl (or food processor) with your dried and pitted dates. Take a hand held held blender and blend until smooth. Takes a while, but it will be pretty smooth. You can also add some of the liquid from your coconut powder to make a little lighter consistency.

--This next step is optional, but you can then strain your date paste through a fine, mesh sieve to get rid of all those little date skin piece that won't blend. You don't have to do it, but I prefer to do the extra step for a little smoother mousse.

--Then add the cocoa power and vanilla and blend well. Put into 4 ramekins and chill in fridge for a couple hours before serving.


So good! 
Would also be a great substitution for chocolate frosting!

Thanks for following along in my workout/health journey. As of right now I still can't do a pull up, but I'm getting closer! And definitely stronger. It's really been exciting to see my strength increase. Anyone else trying to cut down on the white sugar in their diet? Any tried and true tips? What other whole food dessert recipes do you swear by? 

Monday, May 23, 2016

Barely Worth It is Still Worth It


Weeks ago I remembered that there was a Lantern Fest event coming here to Cincinnati and I really wanted to go. I thought it would be a fun family outing and that the girls would especially love it--hello Tangled! (I cry almost every time I watch that scene). This activity was a rare opportunity that had magical childhood memory written all over it. I was so game.

On the other hand, it could be a total bust.

As the frequent head fun-family-outing-planner of the family I feel this pressure when deciding on an outing like this. If it's great well then fantastic! Everyone wins. But if it stinks then not only do you waste family resources like money, time, gas and patience, it makes it that much harder to get everyone on board the next time you have a wacky idea. So immediately I was feeling the pressure. On top of that, there are so many variables. Is it family friendly? What if we're having a bad weekend and just want to relax? What if it rains? And then there's the effort. Fun family outings are effort and work. Staying home with a bowl of ice cream and watching TV is always an appealing plan B.

The other huge variable with this particular event was other people. This would only be a cool experience if lots of other people came. Like hundreds of people. So there was that.

In the end I followed my gut and bought the tickets, and invited some friends to come along as well.

There was a threat of rain the entire weekend and when we got there Saturday evening around 5:30, it was chilly. Like we should have brought more than just a sweater chilly. We checked in and got our lanterns and s'mores kit, but as we walked in it was looking a little sparse.

There were also supposed to be plenty of vendors in the form of food trucks, games, kid friendly booths, etc. Turns out there weren't food trucks. There was A food stand with hot dogs, hamburgers, fries and the like. I think there was also a snow cone truck? As far as all the booths and games there was a face painting booth, a balloon animal booth, spin art and a that was about it. GULP. Our friends got there and I immediately felt a little sheepish... Hey guys! Thanks for spending way too much money and driving way too far to hang out in a muddy field with a couple hundred other people and 3 booths. To be fair, they did have some games going on up front, a nice little stage where they played some music but it felt like there should be more.

Inevitably the lines to each booth were super long, so us adults split up and each took a line and stood in place for the better portion of an hour. The girls made some spin art, got a balloon wand, and finally got their faces painted.





But the kids were having a good time. They weren't whining or complaining. The sun came out and get this, as the evening wore on, it actually got warmer. The bon fires were lit and the making of the s'mores commenced. Finally the live music started and Lamp said she wanted to go watch. And by live music I mean a girl with a guitar. She was good, but once again I had anticipated more. Maybe a band, maybe more acts... I don't know. But as we made our way to the front led by our fearless power chair driving girl, we did what we do best in these situations: we danced. By this point I stopped feeling the pressure to make sure everyone had a good time and I just started to have a good time. The kids had on face paint, they had balloon wands and it didn't matter one wit to them if we had to wait in an hour long line--what else did we have to do?





Dancing to live music with my family during the golden hour? That's never a bad way to spend a Saturday evening. We hung out with our friends and talked about kids and music and sports and nothing-that-important but good stuff all the same and we waited.

And finally it was time....




With lanterns lighting up and sailing away all around us as John Lennon's Imagine was piping through the speakers I realized, this was worth it. The girls were giggling and twirling around the way they do when the magic hits them and saying things like I love this! and This is awesome! We watched and took pictures and looked up at the thousands of lanterns floating in the sky at once and I remembered that this was the moment I was hoping for. Magical moments are rarely effortless affairs. They take a lot of work and sometimes a lot of patience, and letting go of expectations and giving into the moment. But in my book barely worth it, is still really worth it. As cliche as it is, sometimes you have to carpe the freaking diem. Because we only have so many diems left! Especially while our littles are little. All in all it was a 7 hour experience with good friends, good conversation, not great food, long lines and a little dance and about 30 minutes of pure magic.

Barely worth it, but also really worth it.
So high-fives to us and a great weekend.


Anyone else do anything particularly memorable or fun this weekend? Anyone else ever been to Lantern Fest? There are quite a few of them going on throughout the summer and even Fall around the US. You can check dates and locations here. Also, I should mention that I'm sure each event probably varies greatly depending on local interest and vendors... I'd love to know how your Lantern Fest experience went and if you'd go again. I think we'd go again, but maybe not so early this time. 

Friday, May 20, 2016

Spotlight Revisited || Ethan, Cade and Colby

Emily and her Husband Brig

Hey everyone! I decided recently that when I don't have a current spotlight to post, it would be a great idea to re-post some of my favorite spotlights from the past. This one is one of those super family, hard-to-forget spotlights. Not only do I love it because it's written from a sibling's perspective, but also because this is a family who seemed to have more than their fair share of heartache and yet they persevere. The original spotlight was posted here in March of 2013.


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Hi guys!  I'm so excited to be doing a little different special needs spotlight today.  Instead of hearing from parents, we're going to hear about special needs from a sibling's perspective.  As a mother I'm particularly interested in knowing what it's like for a sibling.  Emily really gives some great answers and has a great perspective.  I think all of us are very grateful for those amazing siblings of our special needs kiddos.  Thanks Emily!

My name is Emily and I am honored to be here on Miggy’s blog! I am married to my best friend, Brig, and we are in the midst of getting used to being parents!  Our little boy arrived on February 23, 2013 and is a blessing!!  In 1990, my oldest brother was diagnosed with Duchenne Muscular Dystrophy and in 2002, we found out my two youngest brothers were also affected by the disease.  It has been and continues to be a hard thing but we are a happy family!

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Miggy: Emily, you are the first sibling that I'm interviewing and I'm very excited for this unique perspective. You grew up with not only 1 brother with special needs, but 3! Tell me, do you remember when you first realized your brothers were 'different' and had different needs than other kids?  How old were you? Was there a specific moment of clarity or understanding? 

Emily: My oldest brother, Ethan was diagnosed the same year I was born when he was 7 years old. By the time I could remember and was really paying attention, he was in a wheelchair so that was the norm for me. With my younger twin brothers, Cade and Colby, there was a moment of clarity. I was 10 when they were born and 2 years later is when my parents told us that they too had MD. Immediately I knew what was in store for them and it was heartbreaking for all of us, especially Ethan.


Miggy: What was day-to-day life like with not only 6 children, but 3 of those children having special needs? 

Emily: Day to day life was pretty normal for me, I think. It’s the only childhood I knew. When I was younger, it was just Ethan who needed help. As the disease progresses, the muscles get weaker and weaker and more functionality is lost.  So Ethan needed help with everything from bathrooming to scratching his nose. My siblings and I did a lot of those little tasks for him like lifting his arm to scratch an itch or propping his arms up on his box so he could eat. We had a lot of fun together and found joy in things other families do like vacationing together and playing Nintendo. We lived in many different countries growing up, so in that sense Ethan had a rather spectacular childhood as he had a lot more cultural experiences than most people get to. That was a huge blessing in his life. 

Being 10 years older than Cade and Colby who are now 13, I have been out of the house as their disease has progressed for the past 4 years. I see them very often and they require the same help that Ethan did. 



Miggy:  Tell us about your parents and how they handled the challenges and opportunity of raising your unique family. 

Emily: My parents are saints! From them, I have learned to take challenges as opportunities instead of setbacks and act instead of becoming a victim of this horrible disease. They have been strong for each other and for their children.

One reason I am so honored to talk about my parents is because of the struggles they’ve been through together.  I have 4 brothers, 3 of whom, as you know, have MD. The 4th brother, Ben, was just younger than Ethan and was the only healthy brother. He was vibrant and strong and he was taken from us on his LDS mission to Rosario, Argentina. He died in a train accident and it was so difficult to understand why God took him away too. My parents have shown extraordinary faith in the face of soul-breaking heartache and have come through it. Faith in God has been the key to recovery for all of us and our faith is stronger today than it ever has been. That is all thanks to the example of my incredible parents.


Miggy: I think that all of us parents of children with special needs worry about the siblings--our 'typical' children. Are they getting enough attention? Do they feel as special?  Are they going to resent being dragged to endless therapy/doctor/specialist appointments? Do they have too much responsibility? From your perspective, what can we as parents do to help our other children thrive in this special needs journey?

Emily:  I think the most important thing parents can do is have individual, specific time that is set apart for each child. I loved being together with the entire family and always felt loved and cared for but the most special times were the dates with my mom or dad. They made sure to take time out for each of us and make us feel important and unique. Also, just showing unconditional love to your child with special needs helps other children know that you love them unconditionally too. There needs to be an atmosphere of love and peace in the home.


Miggy:  Of course us special needs parents also know how wonderful and special this journey is. As a sibling what were/are some of the benefits and blessings of growing up with siblings who had special needs?

Emily:  Oh, the blessings are innumerable. You are so right- it is a wonderful and special journey. I feel so blessed to have these experiences in my life because they have given me perspective.  I can empathize with so many people.  I feel comfortable around people with special needs (I have found that feeling comfortable around these special people is not as common as I thought). I am so grateful for this because people with special needs have brought so much light into my life. My faith in God is stronger, my empathy is deeper, my heart is fuller because of my family. The biggest blessing I think is a sense of pure appreciation for the moments we have together.  I cherish them.


Miggy:  Emily, one of your brothers died from MD in 2009 at the age of 26.  What would you like us to know about him?  

Emily: Thank you for including this question, Miggy. Ethan died on January 15, 2009 in his sleep.  I want people to know that he was strong til the end and died with peace in his heart.  He wasn’t always at peace.  He went through stages of anger towards God and everyone around him, frustration at his lack of ability to do the things he wanted, sadness because his brothers would share his fate.  But he endured. What an incredible example to me!  He kept his sense of humor and his innate kindness. 

In the last 10 years of his life, his needs were demanding on everyone in the house, especially my parents. I wish I had been more patient and kind to him when he needed me.  Sometimes I would get frustrated from all the times he needed help and that is my biggest regret. Be kind, be patient, be charitable.

  
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh even when times are tough. Do you remember any funny conversations/moments from your childhood due to your special needs situations?  

Emily:  Oh yes! So many funny moments! The one that stands out is that in the cemetary where Ethan and Ben are buried, there are plots for my dad, mom, Cade, and Colby that are just grass right now. We joke that we are going to all lay down in our respective grave plots and take a picture!  Black humor is definitely a big part of the conversations in our house :)


Miggy: Emily, is there one lesson or nugget of truth that you'd like to tell us about your wonderful family--either your parents, your siblings (including your other 'typical' siblings) or any other aspect of your family that we might benefit from?

Emily: I’ve learned that it is possible to come out of trials stronger than before and that’s possible if you turn toward each other and toward God. Let yourself feel and emote and share that with your family. Allow them to help you. I’ve also learned that prayer is the greatest source of strength in my times of hurting. Lastly, (I know... that’s 3 things) I’ve learned that happiness can be the fundamental tone of existence even in the midst of family members with special needs.

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Oh Emily, that was wonderful!  First, your parents truly do sound like Saints.  I didn't know your other brother had passed away as well. I'm glad you all have been able to find peace, joy and humor in the midst of such difficulties. Thanks for letting us know that one-on-one time meant so much, and also that one of the great benefits of having siblings with special needs is your comfort level around others with special needs is so high. I love your parting line that "happiness can be the fundamental tone of existence even in the midst of family members with special needs." I think that could apply to almost any trial or difficulty. Thanks again Emily!

If you or someone you know would like to be a part of the special needs spotlight please email me at thislittlemiggy at gmail dot com. If you've emailed and haven't heard back please be patient! I'm always behind on emails.



Have a great weekend!  

XO,
Miggy

Tuesday, May 17, 2016

Vintage This Little Miggy || Lessons from Lamp + Learning about Lamp

I thought it would be fun to post some of my favorite old posts from time to time. This post in particular came to mind as I was talking fact to face with my little Zuzu girl last week and she suddenly saw her reflection in my eyes. Zuzu in your eyes? And then she wondered if I could see myself in her eyes. Yes, I can baby girl... yes I can. Original post date March 26, 2013--it's been lightly edited. 

Two recent Lamp stories. Partly because I don't want to forget and partly because there's a Sunday School lesson in here....

I put Lamp in time-out the other day for biting big sister in the face. (I know.) It actually wasn't that bad of a bite. After a minute in time-out she said, I'm ready to come out now!
No, I said, You bit sister. You're in time out.
Then she said, Awwwww, quit being fwustwated already and just be happy!
I laughed. Sister laughed. Anger melted away and I got her out. It totally worked.

A few weeks prior to that experience, Lamp was being very disruptive in our church's sacrament meeting. I took her out to the foyer and started giving her a little talking to. As I was speaking to her I told her to look me in the eyes. No, Lamp... look at mama right in the eyes. Reluctantly she turned her head and looked me right in the eyes. Suddenly she lit up like a firefly and said, I see [Lamp] in your eyes!

She could see her reflection in my eyes... and likewise I could see my reflection in hers. While there was no intended metaphor on her part I couldn't see past the double meaning. It wasn't just my reflection, I could see myself in her. I don't remember my toddler years vividly (who does?) but I do know that feeling of being a naughty girl and just wanting someone to love you anyway. And that's what I saw in those beautiful, glowing eyes staring deeply into mine.

Once again forgiveness came swiftly.

I hope my kids don't just survive me, but thrive with me as their mom. They are my superior in almost every way. I believe one of the main reasons we're here on earth is to learn how to love, and in my experience children are born with a natural ability to love. They love so deeply and without reservation, pouring every ounce of faith and hope into us, their fallible parents. It's probably one of the few things that we don't need to teach children. Instead we should take every precaution not to yell it out of them, shame it away or misrepresent what real love actually looks and feels like. I also believe that one way children feel love is through rules and boundaries. They're essential and children thrive under them. Likewise, they often feel a lack of love when rules don't exist.

But mercy. The beauty and necessity of mercy. Not to mention its close ally forgiveness.

In both of these situations you could say Lamp charmed the mercy out of me and perhaps one could label me a softy as such. But I don't care, I'm glad I took the bait and took the opportunity to show her I can be gentle and forgiving even when her behavior dictates otherwise. I haven't always seen it, but I'm starting to understand that love will collapse under the weight of justice alone. Mercy is essential for love to grow. It sometimes feels counterintuitive to my beliefs in parenting, but there is a sense of relief, yes even a thrill, in letting go and allowing mercy to take over.

                                                                                                ---Jeffrey R. Holland
*****


Switching gears here... last week Lamp and I went to story time-- a weekly ritual we actually hadn't been to in quite a while. After wards we were hanging out and a mom came up to me and said, I just want you to know that I've been watching your daughter and she just has the best attitude and is such a joy to watch.  I almost got teary as I watched her just scooting around just being so happy. She just has the best attitude!

Bless her heart. I know this mother was just amazed at how Lamp gets around and uses her feet and found her to be an overall delightful and charming girl. I don't blame her, I do too. I was not, am not offended because as I have said a gazillion times I would always welcome a parent talking to me about her in an open and upfront way. I really glad she felt she could come and share her thoughts about my daughter with me.

I was however taken a little off guard as I tried to find the words to help this mother see and understand Lamp more accurately. Here's what I was trying to convey to that mom.

At 2 years old, Lamp does not know she's disabled. And in fact, it's something I often forget myself.  You may bristle at this overly politically correct term, but really... she is differently-abled, more than she is disabled. (That being said, of course I understand that she still falls under the general umbrella of being disabled. Trust me, homegirls got limitations and no one knows that better than me.) Yes she knows on some level that she's different than other kids, and this awareness grows more with each passing day but at this age, this understanding sort of comes and goes.  

Barely having a grasp of the fact that she's different, she certainly is not at an age where she has cognitively assessed her disabilities, the world around her, the cards she was dealt and decided, You know what...I'm just going to have a good attitude about the whole thing. Sure, I don't really have hands, sure I don't know when or how I'll pull off this walking thing, but I'm just going to make the best of it.


I wanted this mother to understand that Lamp is a happy and cheerful little girl because she is a happy and cheerful little girl. She would be the same happy and cheerful girl had she been born with typical limbs. I wanted this mom to understand that while yes she is usually happy and sweet, she's still two.  She has meltdowns and screams and throws tantrums. And if you ever see her doing any of these things it's not because she's upset that she doesn't have hands. While no one has ever been as direct as this mom, I sometimes think that other people make similar assessments. When Lamp throws a tantrum I worry more than I did with PSP, because any toddler screaming at the top of their lungs is a spectacle, but add in some major physical differences and I worry that people are connecting dots that don't actually connect.


I still can't put my finger on the whole of it. I'm not exactly sure what I'm hoping to accomplish by relating this story. I guess it is that at this age, her attitude is not much of a choice. She is who she is.  And while she has such a naturally happy disposition, she's also a person who has bad days. And nether of these things have to do with her limbs. At least not now. Especially not now. Additionally, I worry that people often don't see her sister for the amazing, wonderful girl she is because look at the happy baby who doesn't have hands.

I don't know what these two threads have to do with each other, but they've both been on my mind.  I don't expect people to immediately see past her limbs. She looks different. She does things differently and that's OK to notice. But it's not all about her body. I don't expect people not to see her differences, but I do expect, or rather hope, that they look past her differences as quickly as possible in order to see her humanity. She teaches me, as does my 6 year old, because they are my children and that is a part of parenting. At this age she is who she is without any ego or worse, self-consciousness. You can bet I have a mountain of worry I keep at bay for the day when she is completely aware of her differences and how the outside world responds to these differences. I hope and pray that her naturally happy and bright disposition will stay with her. That it will not be stomped out of her.  Bullied out of her. Teased out of her. Ignored out of her. Overlooked out of her.  Or even high-expectations-of-a-constant-positive-attitude-or-you-must-be-a-bitter-disabled-person'd out of her. But for now, she's just another sweet toddler being her authentic self.

I learn from her.  I teach about her. I reflect and think and share and think some more.
I guess that's all I wanted to say.


PS--for anyone interested the little mice and table set are made by Danish company Mailig.   You can find an assortment of mice and accessories here and here.  The tea set was mine when I was little.  :)

Friday, May 13, 2016

Special Needs Spot;right || Jack and Charlie


I am the lone woman in a family of guys. My husband and I have four sons, aged 14 to 4. Our two middle boys both have special needs. Jack (12), has a rare condition called Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome (M-CMTC). The hallmark of this syndrome, at least for Jack, is profound cognitive delay. He is big for his age, nonverbal, and can be aggressive. He also has autism. Charlie (8), is also on the autism spectrum, but is high-functioning, social, and verbal. He also has anxiety. We live in Utah and together our hobbies include a) spending time in the mountains, and b) surviving. Our family life is complicated, but has also been transformative. We are kinder than we were before. We are more patient with people’s foibles and accepting of their differences. The hard things have made us better people.

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Miggy: Hi Megan. Thank you so much for being here today and sharing your story and your family with us. You have 4 boys, 2 of whom have special needs. Let’s start with your oldest son, can you take me back to the day your first son was diagnosed? How old was he and what were some of the 'red flags' leading up to the diagnosis? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Megan: My oldest son is typically developing. He was a precocious, extra-verbal child, so I thought I had basically nailed motherhood  Clearly, it seemed, I knew exactly what I was doing. And then I had Jack, whose life was fraught with complexity and which taught me that I didn’t actually know as much about parenting as I thought I did. Jack was born with a capillary malformation, giving his skin the appearance of a splotchy red birthmark. As an infant, we noticed that he had low muscle tone, extra flexible joints, and a few other physical differences. When Jack was seven months old, a geneticist diagnosed him with a rare syndrome, giving us a diagnosis and a lot of uncertainty about what Jack’s future would hold.

Learning that your baby has a condition that will severely limit his whole life is devastating. I’ve written before about how on that day more than eleven years ago, our old life crumbled and disappeared. Everything since then has been a rebuilding of a new life. Fear was my most pervasive emotion at the time, and frankly, for many years after. But I am less fearful now, with the perspective of having survived a violent reordering of my life and the constant barrage of behavioral issues that are simply part of our reality. We have made it through so many hard things; I’m definitely jaded, yet I recognize that we’ve lived through trauma before and we can undoubtedly do it again. Not that I want to do it again. I’ll add that disclaimer, in case the universe is listening and wondering what to send my way.


Miggy: Years later you would have a second son who would have different special needs--when did he get diagnosed and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Megan: We knew from a young age that Charlie had anxiety, but we didn’t know he had autism until he was five. He is so different from Jack. We thought we knew what autism looked like, but we were much less aware then that autism really is a spectrum on which people of widely varying abilities can be placed. Charlie struggles mainly with rigidity of thinking and routines. Sometimes people have asked if it was easier to receive Charlie’s diagnosis than it was to receive Jack’s. My answer is this: Nope. It was not easier. It actually felt more difficult than learning of Jack’s differences, because now I knew what life with disabilities entailed. And now there were two.

Charlie has made tremendous progress the last few years because of medication, therapy, and terrific teachers in a practically perfect school setting. It has been heartening for me to see how the right environment and interventions can make such a positive difference. I used to be afraid for Charlie’s future, because his behavior is often like typically-developing kids. People expect children who don’t look disabled to behave "normally.” I worry about this less as I’ve grown to accept that Charlie is perfectly delightful just as he is. Of course I’m his mother so I can get away with saying something so flagrantly clich├ęd and biased, but with Charlie, it is honestly true. He is kind and compassionate, curious and happy. He is polite and helpful. He accepts people exactly as they are. Autism makes Charlie sweeter.


Miggy: Will you please explain what each of your son's diagnosis are, and how their needs affect your and your family's day-to-day life?

Megan: Explaining what life looks like at my house would likely take several days, some elaborate interpretive dance, and a fair amount of  European chocolate. But I will try. Everything we do at my house is circumscribed by the needs of the boys on the spectrum, and especially by Jack’s cognitive disabilities. We have routines in the morning, after school, before bedtime, and we follow those routines because if we don’t, it throws off the dynamic of the household and creates stress for Jack and Charlie. My boys have sensory issues and are limited in what foods they will eat. Jack has an aversion to using the toilet for bowel movements, which means that we live in pootown. Our crew explores the world by manhandling it, and our house takes a constant beating.

When we need to do something out of the ordinary, we have to be aware of how something new and unfamiliar may affect the boys. Because of the nature of his disability and his sometimes unpredictable aggression, Jack doesn’t do well in many busy public settings. We are always preemptively thinking about if a situation will work for Jack. When he does come with us to public places, we have to have a second adult to ride in the car, for safety reasons in case of a meltdown. Jack has a male behavior therapist who rides with me to all doctor’s appointments and other community outings. Many events and places are not a good fit for Jack, and we are fortunate to have respite sitters who care for Jack at home. We are compelled to get sitters for the most basic activities, like going to church, the orthodontist, or the grocery store.


Miggy: What are the biggest worries you face for your children? And conversely what are some of your hopes and dreams for them?  

Megan: I feel confident that we will always be able to meet Jack and Charlie’s needs. We have always managed in the past, somehow, and I honestly feel that the future will work out because God cares about my boys. My fears surrounding my boys often take the shape of worrying that I will burn out and lack the emotional energy I need to take care of them. So I have gotten pretty good at taking care of myself. It’s the overused airline comparison of putting the oxygen mask on yourself before you put it on your child. It’s counterintuitive, but critical to keeping everyone breathing. My husband and I religiously go on a weekly date. We take evening walks together when Jack’s sitter is helping out. We watch The Unbreakable Kimmy Schmidt together after the kids are asleep. I also pray every morning and ask this question: “Tell me what you want me to do today to help my family.” We are all still here and still making progress, so I think it’s working.

My hope for my boys is that they will always find support and love from the people around them. I’m less concerned about accomplishments. They are already successes, living and growing and being in a body and mind that works differently. This feels miraculous to me.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Megan: We once clapped and cheered in the car when Jack told his brother to “shut up.” We were ecstatic that he spoke and it made sense as his brother was bothering him. It’s not an everyday milestone for celebration, but it made us incredibly happy. I also get insanely excited about Jack using the toilet for his number twos, and have to suppress the urge to post about it. “Calling all ships! Jack did a BM, and he did it correctly!” It just doesn’t translate for everyone, you know?


Miggy: You've written a lot about your son Jack in particular and the challenges you face raising a son who is non-verbal and who has violent outbursts, even recently breaking your nose. Certainly this is a challenge for you and your family from a parenting perspective, but I imagine that it also presents as a challenge as you family and your son in particular probably face unwanted judgement. What do you want people to know about Jack? And  how can people best approach or respond to your children and family? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Megan: While most of us feel pretty comfortable with the idea of a sweet, gentle person with special needs, many people are uncomfortable with a violent disabled person. What does one say? How should one respond? There are no easy answers or solutions, so I appreciate it when people don’t try to offer them. Instead of “Have you thought of putting Jack in a home?” a better alternative is, “I’m so sorry things are so difficult right now. Here is some chocolate.”


Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship with your other two sons?

Megan: My oldest and youngest boys play an important role in our family. Their gifts and challenges are different from their brothers’, yet they complement each other. Their strengths fit together like pieces of a puzzle  making the whole thing work. Seeing my boys help and support their brothers is my happy place.


Miggy: Lastly, what is the biggest lesson you’ve learned since becoming a special needs mom?

Megan: I’ve learned that life is so much more than the carefully curated perfection of Instagram and Pinterest. It’s more than what your kitchen looks like or where you buy your clothes. It’s more than where you vacation or how you spend your leisure time. Life is a sharp, grueling journey that has the potential to reveal a better, stronger, kinder you. Life can give us dimension, if we let it.

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Megan I love this all so much. A few things that really stuck out, "There are no easy answers or solutions, so I appreciate when people don't try to offer them." That is applicable to SO many situations, but very applicable to parenting and all the more so with special needs parenting. When your life extends far outside the typical rules as it does for special needs parents, it's like you grow a new set of instincts and well meaning advice from people who don't know can be range from disheartening to offensive  Lastly, I really like your last paragraph as it's incredibly easy to get caught up in how we think our lives should look. Marble countertops, well-curated vignettes and trendy outfits are pretty distractions from what we're really here to learn: how to love and be loved. (Although for the record, I dig a pretty distraction as much as the anyone. Sigh.) Thanks again for your insights Megan and best wishes to you and your amazing family. 

As always if you or someone you know would like to participate in the Special Needs Spotlight series please email me at thislittlemiggy at gmail dot com. 

Have a fantastic weekend! 
XO
Migs

Wednesday, May 11, 2016

Staring Problem


A reader recently wrote to me about her daughter (who also has a visible disability) and how difficult it is for her, as a mom, to watch her daughter be stared at everywhere she goes. She also has a history of social anxiety that makes this an even tougher issue than it already is. And it is tough.

I wrote her an email back, but I thought I'd talk a little more in depth about what to do--or at least what we do--about the staring issue. I've written a post about navigating a special needs encounter for parents of 'typical' kids and what to do when they and their child meets a child with special needs out in public, but this one is for all you special needs parents out there. 

If you have a child with visible differences staring is a part of daily life. I have likened being Lamp's mom to having a celebrity for a child--she is noticed errrywhere she goes. Most often there are stares, but also pointing, kids coming right up to stare close range or even grabbing her arms, children taking about her right in front of her, and the worst case scenarios have been laughing and once a girl crying and screaming saying Lamp scared her. As you can imagine, this can be really hard to cope with. I will say that since we are almost 6 years into this gig, it's gotten easier overall. Easier in the sense that I'm more comfortable knowing what to say and do, but it's never really easy. 

Below I share a list of the tactics we've employed in order from most passive to most aggressive. To be clear, how passive or aggressive we are in confronting people who stare, point, etc is directly proportional to how passive or aggressive their behavior is in the first place. I would also ask that if you don't deal with this type of situation personally, please reserve your judgment on how you think someone should respond. By and large we are understanding people who believe in giving others the benefit of the doubt, but sometimes you really have to address the situation head on for the sake of your child. 


Here are our best tactics for dealing with staring and other unwanted attention in regards to having a disability.

1) Ignoring it. By far this is the easiest and most common thing we do. For the most part, it's appropriate and fine. Usually people aren't trying to be mean or rude, and so often we just keep on keeping on. I would even say we err on the side of kindness and there are times we just ignore behavior that would certainly merit a more aggressive response. 

2) Staring back. Listen I understand curiosity, but there is polite staring (smiling, less than 2 seconds, saying hi) and then there is rude staring (prolonged looking, craning your neck when we walk past, no smile or sign of kindness). I exclude young children (5-ish and under) from rude staring because they don't know better. But when adults walk past and actually crane their necks to keep watching Lamp...Nope. That is not OK.  So I simply stare at the adult or older kid until their eyes catch mine and sometimes I smile, sometimes I do not. This lets them know that 1) You're being rude and 2) I SEE you being rude and I've got my mama bear claws out so don't mess. Almost always people look away immediately and you can sense a sheepishness come over them. For sure I would say this is rather passive aggressive, but c'mon people! 

3) Saying Hi! This is our most common method when dealing with children who stare. We say HI, really nicely, but also loud and clear. I use this for kids who are both very young and therefore not being intentionally rude, and children who are at an age where I feel they should know better. We are almost always smiling and saying this in a very friendly way. And often it's a great way to make an introduction or start a conversation. HI! What's your name? This is Lamp. Sometimes I ask if they have any questions and follow the 4 steps I talk about here. Other times, I say Hi! to simply to let them know we see you and please stop staring. While my husband and I usually aren't confrontational enough to say this to adults, Lamp has learned to use this method when she sees adults staring at her. I have seen many, many an adult who was staring at her caught off guard when she looks straight back at them, waves and says HI! Its like they suddenly wake from a trance, then they smile and say hi back. What makes this interaction so essential is that Lamp goes from being an object of curiosity to a real human being in the blink of an eye. For so long I couldn't figure out why watching these interactions almost made me cry everytime, but now I know. Same thing when I talk to kids and say Hi! What's your name? This is Lamp. She goes from being "different" and "other" to human and same. I've always said that I don't mind people noticing my daughters differences--I think that's normal--but try to move past her limbs and see the human as quickly as possible. This method seems to bring Lamp's humanity into focus a little more quickly, which is essential in the disability world.  

4) Calling them out. Yep, sometimes you just have to call people out. Again, this is not usually something that happens with adults, but it is something that happens with kids, especially older kids. Sometimes we give it to them straight, You're being rude. It's not nice to point and stare. No we don't laugh and stare at people who are different. She's not weird, weird is a rude word and we don't use rude words. You can say she's different. Once at a park I confronted a small group of boys who were no more than 4 feet away laughing, staring and making fun of Lamp. I have to say, this is where my personality is a real asset. I am not a shy violet and thankfully being able to confront people who are being rude is not something I'm scared of. Usually. There have certainly been times where I was so taken aback (and I was still so new at it all) that I didn't know what to do or say. That has happened too. 

5) Telling them to go away. Sometimes you just have to tell kids to go away. I don't think B would mind me saying that he has done this a lot more than I have--ha! I really do try and have a teaching moment with kids and turn the situation around into a positive experience, but sometimes the moment can't be salvaged and sometimes it's best for everyone if we just all part ways. And since usually these are kids who have come to crowd around Lamp and grab at her, it is entirely appropriate in our book to ask them to leave us alone, rather than being the ones to leave. This is something that happens most often at parks, swimming pools or other recreational areas where there are large groups of kids. 

Some other methods I've heard of but have never tried:

A 'business' card. I've heard of moms having cards with a little blurb about their kids diagnosis and asking the parents to please address this issue with their child. From what I understand if a child is hanging around your special needs kid--staring, asking questions, etc--the mother would then hand the child a card and say, "Go give this to your mom or dad." and then ideally the parent would talk to their kid right then and there about differences and appropriate behavior. Some people seem to have really good responses with these cards! I'd love to hear from someone who has used them. 

Wearing a T-shirt. I've seen shirts that say stuff like: Keep staring it might cure my child's autism and then we can work on your social skills. Or there's a popular one in the limb difference community that says 10 Fingers are overrated. I think these might be effective for kids with special needs who are a bit older and who want to 'own' their disability and maybe even get a laugh (this one is classic), but I worry that shirts like the first one come off a little too in your face. And while they may be effective for the few people who could really benefit from it, they may alienate other people who wouldn't stare in the first place but now feel like they can't approach your family at all. BUT Autism is an "invisible" disability and yet one that often gets judgmental stares from people who are making all kinds of assumptions, so maybe this is actually a great shirt to have! Again, I'd love to hear from any of my autism peeps about their thoughts on these shirts. 

So there it is--that's how we deal with the staring issue. As I said we've gotten much better at it over they years--we're more comfortable confronting people when we have to and even just more comfortable knowing it's a way of life for us. Sigh. But should it have to be a way of life? I hope not. Special needs moms and dads what do you do about the staring issue? What has worked or not worked for you? Do you have any advice for a mom who is struggling with this issue especially in light of her own medically diagnosed social anxiety? I'd love to hear your thought and or questions! 

And for all you parents of typical kids, I also want to be clear that I understand that small children really don't know better and rather than being mortified that your child is staring and pointing, and then shushing them while walking away, it really is best if you can take the time to educate them and introduce them to our children. Build bridges of friendship, not walls of isolation. That's what this post is all about. Regardless of your child's age and awareness staring can still be a difficult and sensitive thing for those of us who deal with it all the time. Thanks for understanding. 

Friday, May 06, 2016

Special Needs Spotlight || Tallulah


Hi, my name is Erin. I married my high school sweet heart, Peter, seven years ago and we have three children: Rhonin, 4, and identical twin girls Ellorah and Tallulah, 2. Our family loves being outdoors on bike rides, family walks, kayaking, beach days (surfing for the kids coming soon!), playing at the park, etc., so luckily we live in sunny Southern California and we are able to spend most of our days in the sunshine. Our girls were born 8 weeks premature due to late stage Twin to Twin Transfusion Syndrome (TTTS). Tallulah had to be resuscitated and placed on oxygen for two days. At two weeks old, we were told Tallulah had suffered a small bit of brain damage and a grade one brain bleed, and that doctor told us that this WOULD lead to some form of cerebral palsy. Now, at two years old, she sees a neurologist and goes to occupational and physical therapy but she has not been formally diagnosed with a particular disability. The damage to the left side of her brain has affected her fine and gross motor skills on the right side of her body (very similar to a stroke, which is still up in the air as a possible cause of damage).

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Miggy: Hi Erin, thank you so much for being here today and sharing your story and especially your sweet family with us. Your daughter Tallulah, who is also a twin, was only two weeks old when you were told that she has suffered a small bit of brain damage as well as some bleeding. What did that moment feel like? Tallulah is now 19 months old, can you compare those first thoughts and feelings with how you feel now?

Erin: It was our nightly visit to the NICU (the girls were there for a month, and Tallulah came home two days before her sister), the doctor came in and sat down, and at that second I knew they found something on the brain ultrasound that we weren't going to want to hear. My husband was holding Ellorah and Tallulah was sleeping peacefully on my chest. After he gave us all the information and we asked our questions I just said while rubbing her back, "Well, at least she is here." I didn't cry in front of the doctor or nurses, which isn't like me. We left, and were quietly walking to the car holding hands in silence, my husband said something, and I broke. I was so scared for this tiny human that should have still been warm and safe in my belly, and now we are being told she may never walk! I cried. My husband cried. Our family had been through so much in the last few months, and now we look to our future with fear and uncertainty.

At 19 months she took her first few steps on her own, and at 23 months she decided she wanted to kick it into high gear and make this walking thing her regular business! We are so proud. And more importantly, we can see how proud she is of herself. Watching Tallulah now, I still have some worries, but I can look to the future and see her running at the park with her siblings, grabbing branches to climb trees, dancing, playing an instrument, and so much more!

Miggy: It is thought that your daughter might have CP, but she also might not. Can you tell us about her current needs and how they affect your day-to-day life?
  
Erin: She just started regularly walking about a month ago. Since she just started, it takes a little longer to get places. It can be difficult at times because her brother and twin sister sometimes take off too quickly, then I have to pick Tallulah up and run after them, but she is throwing a fit flailing in my arms because she wants to walk; it's fun. Her biggest need is working with her right hand. We have to do stretches with the hand, arm, and shoulder. She tends to keep her hand in a fist when she is concentrating, for example while walking or using utensils. Tasks that are simple for others she can do, but she really has to think about how to control the right side of her body to perform the task, such as giving a hug or holding a cup. We are also working on her speech, which she has recently come along way with, but it hasn't been determined if the slight delay is due to her brain or the prematurity.

                                                                                                  
Miggy: Granted Tallulah is only 2 years old, and the whole picture is still coming into focus, but what are the biggest worries you face for your daughter? On the contrary, what are your hopes and dreams for Tallulah?

Erin: I would say my biggest worry for her is that she is an identical twin who has different needs than her sister. While we know that they are two different people developing, society tends to think of twins as being the same. I am so scared of the comparisons they will both receive, especially Tallulah. People already compare and ask questions, such as "Why isn't she crawling/walking?" "She doesn't talk as well." One person even said (without knowing that she had any sort of delay) "We'll just assume Ellorah is the smarter twin." This comment killed me! I think toward when they go to school and wonder, "Will Tallulah need any special education?" "How will classroom physical activities be carried out for her? Will she need modification?" "How will Ellorah treat her sister? Or will she stand up for her if the time ever arises?"

On the contrary, we have been told by her therapists and neurologist that they predict, in their crystal ball, that Tallulah will be able to do everything Ellorah and other children can do we just might have to spend some time at therapy working on certain skills. I hope that Tallulah always feels supported in her goals and activities she wants to be a part of. I hope she can understand how much she has accomplished in just two years of life and she can use that as a platform to accomplish any goal she sets her heart on.


Miggy: How can people best approach or respond to Tallulah and your family at this time? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Erin: I would love for people to avoid trying to compare my twins. Special needs or not, they are two different people! There are milestones Ellorah has hit first and some that Tallulah did first. Just because Tallulah has to concentrate a little more on certain tasks doesn't mean she can't accomplish a goal before her sister. And most definitely, don't call one smarter than the other! I am very open to explaining why Tallulah looks a little different walking or why her hand opens like a claw sometimes, so rather than making a joke about my child, just ask. And if a person does comment, be prepared for me to explain why and don't brush me off as if it is difficult for me to explain.


Miggy: What is the biggest lesson you’ve learned since becoming Tallulah's mom?
Erin: The funniest thing Tallulah has taught me is how difficult I AM to deal with because I can be so stubborn! That little girl is my personality twin, and has been since the womb. The two of us have had some crazy power battles; I am almost scared for the teenage years! I always thought I was a patient person, especially with children, but Tallulah has taught me there is more patience to acquire! There are times I just want to get things done or get somewhere fast, so I try to carry her so we can go faster. Then, she cries because she actually WANTS to walk, and that is the moment I have to stop, slow down, and patiently walk with her. I think she is teaching her siblings patience too because they are usually pretty good about walking with us or waiting for her. I have also learned that doctors are human too. They can predict the future as well as I can. Sure they might have a little more insight on her condition based on other people they have worked with, but my husband and I need to make our own decisions about the treatment and future of our children. We were told by a doctor that our daughter may never walk, but she is, and before we know it she will be running away from us!

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Erin thank you so much for sharing your story and you sweet girls with us today. It is heart wrenching to receive 'bad news' about your baby and to be told what they won't do. But yes, doctors are people too and are often just making educated guesses--well educated guesses mind you, but people and babies and children are so much more than a diagnosis aren't they? And yes to treating people--even twins gasp!--as individuals and to NEVER telling someone that one of their girls is smart than the other. Thanks again and best to you and your beautiful family!

You guys I am in need of more spotlightees! So if you or anyone you know are interested in sharing your story please email me directly at thislittlemiggy at gmail dot com.

Have a great weekend!
XO
Miggy