Special Needs Parenting

How to Survive a Crisis (and even thrive!)

Life can get downright overwhelming at times. How do you handle times of ongoing stress? Like Faydra Koenig mentions in her new blog post Living While in Personal Crisis it’s all too easy to succumb to the temptation of binge eating in yoga pants while numbing your mind on Netflix reruns.

And you know what…that’s okay. For a little while.

But when it starts to drag out for weeks or months, it’s time for you to take action. Don’t know where to start? Living While in Personal Crisis gives you actionable steps to take so that you can start to feel alive again. She’s done the thinking for you.

Crisis happens. You think I raised my hand and volunteered to hook myself to the scandal that hit my family? Ummmm, no. Emphatic NO! Did it happen anyway, yes. Sitting in my yoga pants, eating chips and dip (man I love chips and dip) was my silent middle-finger to my situation. Weathering my storm zapped my energy and for a moment I found sustenance in Reduced Fat Ruffles and this sour-cream-Ranch-dip-thing I like to make. (Don’t judge me, you jerk) After a while, the thought of mixing up the dip and going to the store for more chips felt like a misuse of my time. I started to want more. I wanted to stop going out to get chips and I wanted to go out and get a life. No one was coming over to moderate my chip intake and tell me that there was more to life. I had to find it for myself.

I’m filing this one away on Pinterest for future reference. In our family, there’s always something around the corner…and I like chips too.

Learn more about Faydra here.

How to Keep Romance Alive When Life Gets Crazy

In a healthy long-term relationships, romance isn’t saved for birthdays, anniversaries. Hectic times can happen to any of us, but it’s always important to check in with your partner and let them know you’re thinking of them. It’s incredibly hard to keep the passion alive when we’re juggling raising kids and having to drive them everywhere, possibly dealing with illness and therapy appointments, financial stresses and job responsibilities. All too often romance is the last thing on our minds after a long day of running around. But when life spins out of control, there’s lots of simple little things you can do to keep romance alive when life gets crazy.

Romance With Your Words

Let’s start with words. Those can be either spoken or written words or even texts. Tell your spouse that you love him or her every single day. Tell them how much you appreciate what they do. It doesn’t take much time or effort, but makes a big difference in your spouse’s day. We all want to feel appreciated and hearing some thoughtful expressions of love and appreciation will do just that.

If you’re on the shy side or you’re not around your partner much during the day, share your romance with written words or texts. Write a little love note and hide it in your partner’s lunch box, brief case or purse to find during the day. Send them a quick email or text to let them know you’re thinking about them. Or you could even go old school and write a love letter. No matter how you do it, use your words and keep the romance alive.

Romance With Acts of Kindness

Of course it isn’t just about the words. You can also show your love and appreciation in the things you do for your partner. Pay attention throughout the day and see what you can do to make his or her life easier. Go get gas in the car or ask them if they need anything while you’re out. Surprise your significant other with coffee in bed in the morning, or send them off to take a nap or a long shower while you take care of the kids. How big or small your shows of affection are really don’t matter as long as you make it a point to do something special for your loved one each day.

Romance With Physical Affection

This is all too easy to put on the back burner. Keep the fire burning by kissing your partner every morning or and give them a quick hug while you’re both fixing coffee. Again, this doesn’t have to be a big deal. Sure it’s nice if you can take 30 minutes to give your partner a long massage but on crazy busy days it’s easy for exhaustion to take over. While the days may be busy, there’s always time to work in quick hug, a kiss or holding hands when you can. And don’t forget about things as simple as snuggling on the couch while you watch TV after a long day of work and raising kids.

How to Work at It Even When It’s Hard

Some days it’s a lot harder to be romantic than others, isn’t it? We all have crappy days and sometimes just don’t feel like putting in the time and effort. Do a little something anyway to nurture your marriage. Marriage takes work as does keeping the romance alive.

As I mentioned earlier, that doesn’t mean you have to go all out all the time. It’s perfectly normal to get tired, have a bad day and you should let your partner know when you’re feeling that way. But when that single day turns into weeks and even months (or more) it’s time to get intentional and renew the love, passion and romance in your marriage.

When things are in dire straits it isn’t easy to make the first move. It’s especially hard when you just aren’t feeling it and your spouse isn’t helping. It’s hard when you’re feeling stressed, didn’t get enough sleep and are upset with your significant other about forgetting to put the laundry in the dryer or something else they forgot. It’s going to take hard work and lots of intention to rekindle the romance in a marriage worn down by the responsibilities and worries of everyday life.
Start small. You’re not going to fix everything that’s wrong in a day. Begin by making small gestures, like a kiss and a compliment. Show some affection and interest and demonstrate how much this relationship means to you. Get away from the house, and over coffee or quiet dinner have a conversation about the lack of romance and what the two of you can do together get the spark back.
Slowly work your way up to more romance. The most important thing is to spend quality time together. Feed the kids dinner first and then sit down to a romantic candle light dinner just for the two of you. Better yet, go out. Find a babysitter and go out to watch a movie together. Once a year, try to get away for the weekend.

Forcing yourself to be romantic when you’re not really feeling it is well worth the effort. It shows your spouse that you still care and still want to make him or her feel loved.

This is by no means an exhaustive list. Think of it more as some inspiration to help you get started. Give one or two of these ideas a try, but you might want to come up with things to do that are meaningful for both of you. Just keep making that effort to do something every day to keep the romance alive.

For further reading, here’s some book recommendations:

47 Little Love Boosters for a Happy Marriage

5 Love Languages

Sacred Marriage

The Power of Prayer to Change Your Marriage

Why My Son With Down Syndrome is My Greatest Teacher

It’s October, and in honor of Down Syndrome Awareness month I’d like to share a bit about how my son with Down Syndrome and how he’s impacted our lives.

In 2001 some measurements on my routine ultrasound indicated some soft markers for Down Syndrome. I was devastated and didn’t know how I was going to cope with one more family diagnosis. I spent the remainder of the pregnancy praying that it wasn’t the case.

In the operating room following my planned c-section, his almond shaped eyes were immediately obvious. The hospital staff was silent. I didn’t stop crying for days and didn’t know if I could ever accept him.

15 years later, I can look back on the many life lessons that Nicolas has taught me. As it turned out, having a child with Down Syndrome wasn’t the end of the road…it was just a little bend. A road less traveled. It hasn’t always been easy, but the impact he’s had on our family is immeasurable.

He’s brought dozens of wonderful people into my life that I would not have known if it weren’t for him.
Wherever we go, he always seems to know someone.
He’s had a great impact on everyone who’s ever volunteered with him and they’ve all come to love him.
He’s taught us compassion and acceptance of people of all abilities.
He’s probably been in our local papers at least half a dozen times because his smile is just that magnetic.
He inspired his older sister to become a speech pathologist.
He taught me, his introverted and shut down mom to learn to use my voice to advocate for him and awakened my long dormant gift of stringing words together and got me started blogging.
God has used him to drive much of my self-centeredness away.
He continuously teaches us true joy and worship.
He inspires me in my own physical struggles with dystonia to never give up.

I previously wrote:
Over the years I’ve noticed people with Down Syndrome have a unique way of assessing a situation and speaking the truth about it in a very simple, yet profound way. They are also fun. They’re all about the party and the outfit. Many are phenomenal dancers. They go to work. They live and they love. Their angels are always close. Those who love and care for them are themselves transformed. That extra chromosome is truly the “love” chromosome.

What the future holds for him, I don’t know. I get scared but trust that God is in charge and do the best I can to help him achieve the best independence that he’s capable of. But his worth and his right to be here doesn’t depend on a college diploma or career.

He just is, and that is enough. Here’s a few of my previous articles about Down Syndrome:

Our Story of Down Syndrome and Congenital Heart Defects

Dear Sean Hannity: Down Syndrome Isn’t A Punchline

5 Things You Should Not Say to a Special Needs Parent

Five Things About Nicolas

Standing in Solidarity: The Tragic Death of Robert Ethan Saylor

How to Cope with Mommy Guilt and Chronic Pain

It’s that time of year when the reality of the new school year starts to sinks in, followed closely by Mommy Guilt. There’s the never ending doctor appointments and wondering if we should attempt any extracurricular activities. And when do I fit in time for my own self care? Being a mom with chronic pain is the hardest thing I’ve ever had to live with. The mommy guilt is never ending. It’s hard for me to watch the families around me who are able to participate or at least just get their kids to the plethora of supplemental activities in our area.

It’s harder still to watch the happy pictures on my social media feed of happy families who simply get to do life without lots of forethought. Just like I used do to before cervical dystonia entered my life as a very unwanted houseguest in 2010.

In our family we have been blessed that as a retiree with a pension, my husband has been able to take over much of the care for our son and get him where he needs to be. My cervical dystonia diagnosis has also meant getting off the long wait for social services in Florida to get much needed assistance, and I’m profoundly grateful for that. God has shown his provision for our family, without a doubt.

The anxiety begins as I consider the school year calendar. I really need to get in the pool 2 or 3 times a week. How do I manage that at the end of the day when I’m typically exhausted and out of spoons? And what about church and small group activities…you have to show up to feel part of but how does that work when you’re constantly leveled with fatigue? How about a 12 step recovery meeting once in awhile?

These days, many of my friends live in my computer now. I know that’s not the best thing but am not sure what the alternative is in this season of my life.

Right now I don’t know how it’s all going to come together. It is labor intensive for the rest of my family. I’m working on better time management practices and organization. I have to plan around the reality that some days my muscles are going to be spasming so much I don’t want to get out of bed, much less leave the house. I can drive locally but get really nervous on the interstate at rush hour.

Some Tips for Coping with Mommy Guilt and Chronic Pain

Spiritual Disciplines – My journey with chronic pain has really developed my interest in prayer, meditation and the spiritual disciplines. Years ago in recovery rooms I learned that we only have a daily reprieve from our disease based on our spiritual condition. Taking that daily time with God helps the day to flow better, and I’m learning to continuously work on practicing the presence of God and developing a habit of unceasing prayer.

Self care – As moms, we tend to put ourselves last. I did it for years. But when chronic pain or illness is a part of our lives, we have to make that time for our own wellness a priority. It isn’t selfish. Simplify your life as much as you can to minimize stress. Use your crockpot to save spoons at the end of the day. Have your kids help clean the house. If you need a pajama day, it’s perfectly okay. Take full advantage of the convenience of online shopping.

Find what you love and just do it – I blog because I like it. Writing is a great release for me and I’ve loved learning all the technical ins and outs of blogging. It’s empowering to know that my brain still works. I also love yoga. When I could do little else besides lay on the couch and read, yoga gave me my physical life back and something to strive for. For you it might be quilting, crocheting or gentle gardening. Whatever it is for you, it’s a great mental distraction from the dailiness of chronic pain.

Communication – Talk with your family about your condition and how it impacts you without making them feel guilty or overwhelming them. You’ll have children who are more sensitive and patient. That being said, it is hard to watch them sacrifice over and over again.

Let go of Mommy Guilt – You’re a good mom (preaching to myself here.) You are enough. Do the best you can. Embrace life’s little moments as they come to you no matter where you are. Whether you’re on the couch or out and about, your children love you no matter what and appreciate what you do for them.

How do you find balance as a mom and a chronic pain patient?

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5 Mindful Ways to Deal With Stress

Living mindfully is easy enough when things are going your way. But the challenge comes when you’ve encountered a difficult problem with a family member or at work. Maybe your spouse said or did something insensitive that really hurt you. Or your kids are acting up. Whatever the situation is, you’re being bombarded with lots of emotions all at once.

The natural reaction is to want to blow up and just let it all out. While this solution feel better to you at first, this approach can cause long term damage to your relationships. Learn how to deal with life’s stresses mindfully and see how much better you feel.

Begin With Awareness

Often, we want our emotions to be heard, so begin by noticing and acknowledging how you feel. Say something simple to yourself like, “I’m angry that _______ did _______ Take a few deep breaths. Pray a simple prayer while you’re doing this. Notice any other emotions you feel bubbling to the surface like anxiety, depression, anger, sadness, or jealousy.

Analyze Your Emotions

Where are these emotions coming from? Are they linked to something that happened recently? It’s important to pause and ask yourself if your emotions are in reasonable proportion to what happened. For instance, we might react to a minor incident because we’re not acknowledging a problem in a different area. If one of your kids spills something on the kitchen table you might be tempted to lose it with them. But if you take a minute (or more) to pause and regroup, you might realize that you’re angry about some other unresolved problem and took those emotions out on your child.

Think the Problem Through

When your frustration or problem has to do with someone else, think about it carefully before you decide to confront them. Give it a lot of time. Have you been projecting your emotions on to them? Are you willing to step in their shoes for just a moment to look at this situation from their perspective? Most importantly, be ready and willing to listen.

Consider the Alternatives

Sometimes, a frustration or problem comes along that can be handled easily. Ask yourself if you can change the situation. For example, getting angry about difficult relatives or insurance companies isn’t productive and doesn’t solve anything. Ask yourself what your real choices are and what might be the best way to handle the situation.

Seek Guidance

If you have a coach or mentor you can contact, you should do that. Ask them for guidance on how to tackle this problem effectively. Often another person can provide a fresh perspective that can help you look at the situation in a new way. You could also reach out to a small group or community that you’re part of. Your small group can give you the benefit of several different perspectives you’ll probably find out you’re not the only one dealing with these problems.

Don’t beat yourself up if you don’t handle every frustration or problem mindfully. Instead, simply acknowledge that you could have dealt with the situation differently and move on from there. Mindful living isn’t about getting it right every time or being perfect. It’s about living in this moment.

Healthy Smoothies That Your Family Will Love

As the school year gets underway and family schedules become more crazy, it’s all too common to succumb to the temptation and ease of processed foods as you dash out the door. Getting your family to consume enough fruits, greens and other veggies on a daily basis can be pretty challenging, especially when you have fussy eaters. Smoothies are a great way to sneak some healthy produce into their diet but looks and tastes quite like a milk shake. What’s not to love?

Begin with trying out with some simple fruit and yogurt smoothies. Don’t get too exotic right away. While green smoothies are delicious and good for everyone, your kids might be wondering what the green stuff is. Blend some banana, frozen strawberries, and a bit of vanilla yogurt for your kids. As smoothies become part of their routine, you can slowly cut back on the sugar. This is easy to do by reducing the amount of banana and adding more berries. Then you can switch the sweetened vanilla yogurt for plain or Greek yogurt.

Once your family members have become smoothie fans (meaning they actually start asking for them!) you can begin to branch out and introduce them to the green stuff. Start with just a few greens and lots of fruit. If your kids are younger, give the smoothie a cool name like “Green Monster Mash” will help to increase the appeal of green smoothies. Be sure to keep the portions small. Sample a bit yourself and make sure there is no veggie taste before offering it to your kids. A good trick to sweeten up a green smoothie is to add some banana. It cancels out the taste of greens. You might also want to consider adding apple juice instead of water.

This same trick also works well for adults who aren’t green smoothie fans. Your priority should always be to get them to drink the smoothie so they’ll get those nutritious extra greens in their diet. If that means you have to add half a cup of apple juice to make it drinkable, that’s better than succumbing to a convenience meal of cereal, frozen pizza or a plate of chicken nuggets and fries.

Here’s a few more smoothie hacks to encourage them to drink up. Start with some of their favorite fruits, veggies and foods in general. Do you have any peanut butter and in the house? Try blending up bananas, berries, milk and a spoonful of peanut butter.

You can save money and streamline the process by purchasing bags of frozen fruit from your local warehouse club (organic varieties are becoming more available) and the big tubs of organic greens.

Here’s a few healthy smoothies to get you started:

Sunshine Smoothie

1 cup fresh orange juice
1 cup unsweetened vanilla almond or cashew milk
1 cup kale
1 ripe banana, cut into pieces
2 cups mango, frozen (generally available at your warehouse store)
Ice if Needed

Add everything to your blender. Blend until smooth.

Simply Green Smoothie

1 small or half a medium banana
1/2 cup frozen fruit such as berries
1/2 cup low fat, plain Greek yogurt
Splash of milk such as almond or cashew milk
3/4 scoop vanilla protein powder
1 to 1 ½ cups baby spinach or kale
Ice if needed

Banana Strawberry Smoothie

1 cup plain Greek yogurt
1 banana
6 frozen strawberries
½ cup of orange juice

Add everything to your blender and blend until smooth. This makes one serving for a meal replacement, or divide it up for a snack.

Family Cafe 2016 {Recap}

The Family Café exists to provide individuals with disabilities and their families with an opportunity for collaboration, advocacy, friendship and empowerment by serving as a facilitator of communication, a space for dialogue and a source of information.

The Hyatt Regency Orlando and convention center were huge. It was a great locale for our community; it was very easy to navigate and the hospitality was top-notch. And I loved our room! We usually make this a weekend getaway but didn’t have anyone to watch Nic this time around so we wound up taking him with us. It was his first conference and he was a little overwhelmed with it all. It was a lot of walking for him as well as the first time he ever rode in a high rise elevator and he didn’t handle it well, moaning and groaning every time the elevator had to make a stop.

Every time I attend Family Cafe I’m reminded how many families there are like us and we’re not alone. It’s a relief to be around people who don’t stare and who understand the struggles that we go through. The need continues to be vast with 20,000 disabled people on the wait list who still desperately need support and services.

I decided not to overwhelm myself with too many conference sessions. We went to two of them on Friday and the Governor’s Summit. Saturday morning Nic and I went down to the pool. My husband took him after awhile so I got a bit of time to myself on the lounge chair.

The afternoon was spent watching a performance of Mama Mia and then listening to the Pyramid Players (probably one of the big reasons I go back when I can!) Then I wandered the exhibit hall, bought too much chocolate from a micro business and my own disability t-shirt from another micro business (Micro businesses are small businesses are run by people with disabilities and I like to support them when I can.)

In hindsight, I’m glad I took it easy on Saturday and found joy just hanging around the music and exhibit hall. Little did I know the horror that we were going to wake up to the next morning. Initially I heard 20 were killed at The Pulse, and by the time we got to the ballroom to hear Sunday morning’s keynote speaker, it was 50. I don’t think I’ll ever forget hearing that number for the first time. I’ve watched this video of the Pyramid Players performing “Stand by Me” over and over. I filmed it less than 12 hours before the shooting, and it is so poignant now.

Being around the disability community always teaches me a bit more about the importance of community, loving unconditionally, and acceptance. The world has much to learn from them.

One of the marvelous things about community is that it enables us to welcome and help people in a way that we couldn’t as individuals. When we pool our strength and share the work and responsibility, we can welcome many people, even those in deep distress, and perhaps help them find self-confidence and inner healing.

–Jean Vanier, Community and Growth

My Favorite Blogs for Encouragement

Part of self care is learning to reach out to others. Many of us struggle with isolation. Our schedules are overloaded the daily-ness of caregiving, advocating, medical and therapy appointments leaving very little time for socializing. While nothing can replace time spent together in real life, it can be really encouraging to find a few blogs that are consistently encouraging and refreshing.

Use an app like Feedly to help organize them and keep for quick reference. Before you jump on Facebook or other social media, take a few minutes to read something positive and encouraging.

I’m going to keep things simple and just list ~~five~~ seven of my go-to websites for spiritual refreshment.

She Reads Truth – I can’t say enough good things about this site. It has revitalized my devotional time which had become quite stale and now, I don’t miss a day.

Rachel Wojo – practical Christian living helps to help you walk out your faith every day.

Clare Smith – If you’re like me, practicing and maintaining a healthy lifestyle doesn’t come easy. I check in with her frequently to help me keep motivated.

Sheri Dacon writes extensively about her faith, struggles, disability and the church.

Ellen Stumbo is a mom of three, two with special needs. Her heart is to encourage churches to embrace disability.

Gillian Marchenko is a mom of two girls with Down Syndrome. She also writes eloquently about depression.

Special Needs Parenting is a blog whose mission is to remind special needs parents that they’re not alone.

Do you have any favorite sites to help you stay encouraged along the way?

Special Needs Kids and Summer Camp

Yesterday we dropped Nic off at summer camp. It’s his third year at this particular camp. He always has a blast. His smile is so infectious that he was featured in a local newspaper as well as on the camp website. I’m always so touched by the staff and counselors who are willing to be a home away from home to special needs kids so that they can have a real camp experience (and families can get a real break!)

I stumbled across a post by GratefulForGrace and was so moved by it. She speaks honestly about the joys and challenges of volunteering at a special needs camp, and how it changed her life. She also heartily recommends more young people should do it. The one point she made that kind of got me was when she mentioned “having to take care of bodily needs that were personal and not my own.” You see, a few years ago I remember someone at a summer event at a different time and place making a rather edgy comment that they *might* have to do that for my son. My stomach kind of flopped. It was one of those slap-mom-in-the-face moments of special needs parenting.

Some of our kids are always going to need help handling their personal care. This aspect of disability ministry isn’t the most glamorous, but it is reality.

And since I, your Lord and Teacher, have washed your feet, you ought to wash each other’s feet. I have given you an example to follow. Do as I have done to you. John 13:14-15.

As a special needs mom, I likewise have had to learn to die to myself in many ways over the years. Don’t get me wrong…I’m very human, very temperamental and prone to complaining at times. Sometimes I wonder how long I’ll have to do it and if it will ever stop.

But while there are some challenges involved in volunteering at a special needs summer camp, I’m always blown away by the smiles on the faces of the volunteers when I pick him up. They’re having a blast. I’m frequently told by volunteers that they get back way more than they give.

To all of you wonderful folks who are volunteering at special needs camps and disability ministries and ministering to our kids with love and compassion…thank you from the bottom of my heart.

Have you found a camp for your special needs child? What has your experience been?

Our Special Needs Summer Survival Plan

Summer is a challenging time for special needs families. Here in Florida, schools let out on Tuesday for that long, long break until the third week of August. The month of May, chaotic on any given year was even more so with two of my kids graduating college and high school. Plus multiple end of the school year festivities. Plus three root canals (I was too far gone for the holistic stuff.) And in the middle of all this a brand new diagnosis to come to terms with and read about.

This time of year always gets stressful but somehow I manage to block it out until it’s that first week where Nic is home from school and all hell is breaking loose. Why the stress?

* He loves school, his friends, and the cool field trips. He’s now home with his dystonian mother with the shaky head who can’t drive him to the beach.

* He needs structure. I’m a free spirit who is incapable of sticking to a routine for more than a day.

*It’s freaking hot down here. He barely sweats and has to be watched closely outside so he doesn’t overheat.

*Florida summers also mean wild lightning storms, keeping an eye on the hurricane/ tropical storm forecast, lurking pygmy rattlers, water moccasins, mosquitos and fire ants. And singing frogs.

So what do we have going on this summer?

Well, he just had his OT evaluation today and was pronounced to be really in need of services. That’s no surprise after years of 30-60 minutes a week of OT in the public school system for years. His sister needs OT too but we have to wait for some paperwork to go through. Thankfully, they are holding the spot for her.

His new bike – It came last week and he’s thrilled to be riding it. He does have low tone to contend with but I think his will and determination will overcome that.

Four weeks of camp – We’re fortunate in Florida to have several special needs camps that he can participate in as well as a couple of church based respite programs.

Respite – I’m lucky enough to have respite in a state where the average wait time for services is 10 years. It took my dystonia diagnosis to get it and there are many days I’d give the hours back not to have dystonia anymore but that is the hand I have been dealt. God has provided for me in this way and I’m grateful.

Swimming happens at the YMCA.

And a beach trip. Lord, I can’t wait.

What are your summer survival tips?

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