5 Ways to Be a Pretty Good Special Needs Dad and Husband

I have a wife and a 12-year-old son with severe, classic, nonverbal autism as well as somewhat severe epilepsyI’m in no way a perfect special needs dad and husband. I’m not even good. I’d say I’m pretty good. And I can always strive to be better.

No one, including our wives, are asking us to be perfect. I’m sure they’d settle for pretty good.

So here are five things I’ve learned over the years that I think make me a pretty good special needs dad and husband.

1. You don’t need to reinvent yourself and become this super-amazing dad. That’s not what your spouse or your kid is looking for. Just be a wee bit better than the father and husband you were before the diagnosis.

If you were the kind of father and husband who went out three times a week with the fellas — poker one night, golf on Saturday and football on Sunday — then that’s the precedent your family dynamic has set. So when autism or epilepsy or whatever enters your household, don’t think your family necessarily wants you to drop everything. Just drop one of them, maybe two on stressful weeks.

2. Readjust your priorities. If you always pictured yourself as the type of dad who’d spend the weekends trapped in your garage working on home improvement projects all day, hopefully eventually with your son, you might need to let that go. And you need to evaluate if the home improvement project is really necessary, or if you might be using it as a form of escape.

Home improvement is just an example. I’ve never been a home improvement guy, but maybe sometimes in the early days of our life after my son’s autism diagnosis, I’d use work as my escape and work later and stay longer than necessary. But then I realized I was using it as an escape, and that wasn’t fair to my kid or my wife. So evaluate yourself, figure out if you’re also using something as an escape and adjust accordingly.

3. Have roles and jobs in your special needs household that are entirely yours. I am and have always been the sleep guy. It’s my job to put my son, Kyle, to bed each night. We didn’t decide on that or have a formal conversation about it; it just evolved over the years and became my role.

I’m also the medicine guy. I stay on top of all of Kyle’s meds and vitamins, putting them in his weekly dispenser, re-ordering them when they run out, picking them up at the pharmacy and for the most part I’m the one giving it to him each day. Lately that means getting up at 4:45 a.m. to give him one med that needs to be taken by itself and then getting up 45 minutes later to give him the rest.

Those are two roles that are entirely mine. I’ve got a few more. Wifey’s probably got 50, but being able to take a few entirely off her plate is definitely a help to her. Maybe I’ll try to take a few more off her plate.

4. Have alone time with your kid as much as possible. And during that alone time, encourage your wife to go out and take a break. Your kid needs time with his dad. That’s always valuable and important to both of you. And your wife probably really needs a break. Sometimes for us, it’s as simple as me volunteering to take Kyle to his special needs swimming and music classes without Wifey on a Saturday morning. This way she can sleep in and then go to a yoga class.

You should also encourage your wife to have hobbies that aren’t related to special needs. Researching autism therapies during her downtime isn’t really downtime.

5. When you’re with your family, just be there… be present. I have the hardest time with this. Having a smart phone, social media and my Autism Daddy site is my kryptonite. Sometimes when I’m with my wife and kid, I’m not really with them because I’m checking my phone for the score of the Yankees game or seeing who commented on my latest blog. And if I’m doing that, then I’m with them but not really there. So sometimes, and this is hard for me, I try to put the phone away for the whole day and just live in the moment with the people who are in my presence.

Maybe a smart phone isn’t your kryptonite; maybe something else is. Figure out what’s consuming your thoughts when you’re with your family and work on putting it aside and just living in the moment.

That’s it. That’s my five. Moms and dads, let’s hear what you’d add to the list.

Follow this journey on Autism Daddy.

The Mighty is asking the following: What’s one piece of advice you’d offer about your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Lead photo source: Thinkstock Images


After Seeking Help, Here Are 10 Things I’ve Learned About Mental Health

It’s been 10 months since the start of everything — my journey with anxiety and depression — and three months since I made the return to myself. Now that I can reflect on that period, it was such a tough, confusing and upsetting time. The lessons, however, have been many, and as a result I find I’m now a much better version of myself. For this reason, this will be remembered as one of the best years of my life.

Here are ten lessons I’ve learned about mental health after dealing with my own:

1. People are so kind and there is support everywhere. Make use of it. If you don’t let the people you trust know what you’re going through, you can’t expect their patience and understanding when you’re not yourself.

2. Mental health can be confusing because little is defined in narrow terms. There’s a lot of misinformation and misunderstanding out there about what makes an anxious person or a depressed person. In addition, physical things like hormone imbalances can cause similar symptoms. Just know this – if you are not feeling quite right, it’s well worth exploring why.

3. It’s OK to get help. It doesn’t make you weak. You are not overreacting. We all have stuff we could deal with, anyway. I was so embarrassed at first, but now I’m pretty proud of myself for swallowing my pride and taking that first step into my therapist’s office.

4. Therapy is not a quick fix. Sometimes you don’t feel “better” before you feel a lot worse. Not every therapist or type of therapy is right for everyone, so find the solution you think will give you the best possible chance. Give it time before you give up. It took me eight months and I was totally on board.

5. You can’t force others to acknowledge their issues or seek help. Just be there for them. If they want your help, they will let you know.

6. Everyone is responsible for themselves. I’m responsible for myself only, and the effect of my choices and behaviors on others. The world is not going to fall apart if I don’t try to fix everything and every situation.

7. Anxiety sometimes makes you think you’re responsible for another person’s negative mood and behaviors. That’s not your fault. One of the best tools I have learned is to always counter “what if” with “what if not.” Or just ask and put your mind at rest!

8. Sleep holds everything together. Even now if I don’t sleep well for a few nights consecutively, my memory, words and concentration desert me. I suspect this will continue to challenge me for the rest of my life. If I’m philosophical about it, my sleeping patterns are a barometer of my stress and anxiety levels, always providing me with an indication of how well I’m doing.

9. There is nothing wrong with taking medicine. As my therapist suggested, see the medicine as an “antibiotic” for your unwell mind. But I also learned therapy, diet, supplements and exercise are important too – perhaps just as important as natural or prescribed medication. You just have to find the right approach for you, for that time.

10. Anxiety and depression are not unique, but the stigma and shame are alive and welloften self-imposed. We are everywhere. If you dip your toe into the scary sea and start talking about it others will probably talk back, and you will realize you’re anything but alone.

Follow this journey on Not The Kind of Person.

How Trips to Disneyland Helped Our Son With Sensory Processing Disorder

It’s always a special treat when we learn a guilty pleasure is good for us, like when you read studies about the health benefits of drinking wine or eating dark chocolate. It’s like a private party of justification and validation in one. Woot, woot!

That is exactly how I felt when I was told by my son’s occupational therapist (OT) that our frequent trips to Disneyland were a version of sensory therapy. It was like I’d won the sensory lottery.

See, my son is an avoider. As a baby, he never slept soundly. During this time, I had to hold him tightly or he’d flail like he was falling off a cliff. We tried to go out to dinner, but the margarita blender at the Mexican restaurant sent him into a screaming tizzy. And so we turned our apartment into a dark cave with blackout curtains to block the sun, and I’d watch him line up his toys in the safety of his controlled environment.

But then, my son’s father suggested I take him to Disneyland. I wasn’t so sure. Our son couldn’t even handle a park, and the McDonald’s playground was torture for him. Regardless of my worry that he’d be miserable all day, we packed up a stroller and drove 45 minutes to the happiest place on Earth. And shockingly, it was the dreamiest and most magical place we’ve ever taken our son to. Though my tactile-sensitive toddler refused to wear clothes, we tucked a blanket around him, and no one seemed to notice (it was a Mickey Mouse blanket so totally OK). He stayed in the comfort of his stroller, observing the spectacles before him and loving it.

We did what any parents in this situation might do by making a Disneyland sensory plan and purchasing annual passes. I started taking him to Disneyland and California Adventure a few times a week. It became my job. Even if we just went for an hour in the morning, it was where he was happy.

As the weeks progressed, he would wear clothes to enter the park. And then he would wear shoes. And then he slowly ventured out of the safety of his stroller so he could get a closer look at attractions like “A Bug’s Land.” We watched that show every day, sometimes multiple times. And he even started singing along! My son didn’t talk, so this was huge. Yes, it was echolalia, but it was something and we were thrilled.

As the year went by, my son would never go near a character, dare to ride a ride or try a new food. But he made progress in his own right and tolerated the constant noise, the crowds and even the parades. This was before we knew about noise-reduction headphones, so my son would hold his hands over his ears to watch the parade in absolute joy and awe.

It wasn’t until another year had passed that we learned about our son’s sensory processing disorder. Once we found our pediatric OT, we were lucky to begin an intensive program, and even luckier to learn our frequent Disneyland trips received an A-plus.

So my advice to fellow sensory mamas is to think outside the box. What does your child love? What do they respond to? Once you find out, run with it and add in all the sensory integration you can. Always consult with your child’s OT, but you’d be surprised at how welcome your extra efforts might be with them. You can’t force a child to overcome their sensory processing issues, but you can gently guide them with the help of your OT and your mama instincts.

Jackie Linder Olson the mighty.1

Follow this journey on Peace, Autism and Love.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Watch This School Chorus Serenade a Teacher Recently Diagnosed With Cancer

Get your tissues handy for this one.

Adriana Lopez is a teacher at Public School 22 (PS22) in Staten Island, New York, who was recently diagnosed with breast cancer, BuzzFeed reported. The PS22 chorus decided to dedicate a touching performance to Lopez in honor of her diagnosis.

They performed a moving rendition of Martina McBride’s song about cancer, “I’m Gonna Love You Through It.”

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I want to thank you for this special moment,” Lopez says in the video below. “It’s not easy, but I will get through it because I have wonderful friends at this school.”

Watch the performance below: 

Check out the PS22 Chorus YouTube channel for more of their videos. 

10 Tips for Traveling With Chronic Fatigue Syndrome

Traveling with chronic fatigue and immune dysfunction syndrome (CFIDS) is one of the biggest challenges I’ve ever faced (it comes in second to living with CFIDS, to be honest). For those unaware of CFIDS, it’s a neuro-immune disease for which there is no cure.

You constantly feel like you have the flu and have been run over by a semi-truck. Your body hurts all the time, your brain is fogged and you have to carefully ration your energy. You can make plans but never know if you can fulfill them because your pain and energy levels can change in a minute. And no, it isn’t the same as feeling tired all the time.

So what if you have CFIDS and love to travel? While it can be difficult (and may make you sicker for a while), I believe it’s well worth doing. There’s a lot you can do to prepare beforehand and while you’re traveling that can help.

If you’re living with CFIDS, remember to space out your energy expenditures. You might only be able to travel once a year (or less, or more), so listen to your body.

Here are my 10 tips for traveling with CFIDS:

1. Plan ahead as much as possible.

If you can do the bulk of the work beforehand at your own pace, you’ll be able to control the energy expenditure for this process. Figure out routes that will save you time and energy. Research the restaurants you would like to eat at and the grocery stores where you can stock up. Figure out if attractions are worth visiting and if they’re accessible to you. Learn any phrases you’ll need in a foreign language and download a language translation app to your smartphone or iPad.

2. Be realistic about what you can and can’t do.

You might be able to do one big thing a day (or some days, none). Seeing a little bit of a place is much better than seeing a lot of the ceiling in your hotel room. Ask locals for the best off-the-beaten path things to see and do, since they’ll be less crowded and you’ll be able to experience them at your own pace. One of the best times I had in Ireland was at a quiet library, talking with the librarian about books we loved, swapping library stories and gathering information on great places to eat and a hidden beach.

3. Don’t be afraid to ask for help.

Whether it’s a wheelchair when you’re too tired, a rest from traveling or help with something as simple as helping place a pillow behind your back in the car, people will be happy to help you. I know it’s difficult to ask for help; it goes against our desire to live independently. But don’t try to pass as abled, it will only make you sicker. We all know this, do this and know we shouldn’t.

4. Schedule time for rest in between socializing.

Many travels are around events: holidays, weddings and reunions. This is a great time to make sure that you tend to your body as best as you can. If you need a daily rest period, make sure to work it in even if you would prefer to stay and talk. You’ll emerge refreshed and will able to interact with a clear head instead of in a fuzzy state where you don’t remember a thing and you probably won’t have any meaningful conversations. Beforehand, ask the host for a quiet place to rest. They’ll be happy to help.

5. Maintain your routine.

Be sure to pack your vitamins and medicine for starters. But if you prefer a super green smoothie for breakfast, find a way to get a super green smoothie for breakfast instead of loading up on pancakes or nibbling a granola bar in the car. If you’re always cold, be sure to pack enough warm clothes to help. If you need a heating pad, bring one. The list goes on and on and differs for each person, but it’s worth noting what you do every day to make life easier for yourself (and less painful).

6. It’s OK to pay for help.

Whether it’s travel planning or hiring a guide at your destination, it’s OK to pay for help. One of the best things I ever did was hire a driver in Paris. The Metro was too difficult for me and driving was out of the question. It made my visit there a great deal of fun, and I had a safe, reliable transportation option (with travel advice from a local).

7. Don’t try to do everything.

This might be the hardest thing to do for many reasons. You’ll want to see and do everything. You’re out and about, and it’s so enticing and so different from life at home. But this is exactly why you should under-plan — and under-do — each day. You’ll have time to rest and also allow time for serendipity.

When you look at the top 10 lists of things to see in each place, look carefully at each item. Are you totally interested in seeing a particular one? Find your passions and work those in. It might be a restaurant, some incredible landscapes or you just want to sit and drink coffee in Paris. Cut down on what others say you should see and work out what you totally want to see.

8. Communicate with your travel partners.

Once your travel partners know your limits, they can help you and also choose to do other things while you rest. They will also know that no matter what you want to do, they should help guard your energy and time from others — and yourself. I always want to push myself and experience all I can, but my husband reminds me and reigns me in when I get that super tired look in my eyes. Sometimes, we’re our own worst enemy.

9. Consider renting a home or apartment when you travel.

We always do this when we travel for several reasons. There are spaces away from common living areas in which to rest (instead of one hotel room, where rest is nigh impossible with a family). There’s a kitchen, so you can eat when you want without having to expend the energy on being in a restaurant. You can also have a variety of healthy snacks available.

10. Don’t forget to pack what you need for traveling to and from home.

Because I also have mobility disabilities, we always rent a car. Cars can take you right to the door, so you’ll be able to save your energy for the place you’re going instead of spending it on getting there. Pack enough pillows so that you can sit comfortably, stop at every rest stop to move around a bit so your muscles don’t cramp up and create a restful car environment.

If you’re flying, pack all medications in your carry-on. Bring earplugs or noise-canceling headphones. If you can, bring a small pillow to ease your neck. Also, ask for transportation to and from the gate. This will not only help with your pain and fatigue, but help you avoid huge crowds, pushing and noise, too.

Traveling with CFIDS might seem like an enormous undertaking. And, to be honest, it is. But it’s worth it. Explore the world on your own terms. It’s the best gift you can give yourself.

Jessie Voigts the mighty.2-001

A version of this post originally appeared on Wandering Educators.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Cancer Patient Gets Musical Surprise on Her Last Day of Chemo

Now this is how you celebrate a milestone.

Ann Trachtenberg is a patient at the The University of Wisconsin Carbone Cancer Center in Madison, Wisconsin. Rencetly, she made a joke to her niece that she wanted to be escorted out of her last chemotherapy treatment by a marching band, the Journal Sentinel reported. Her niece wasted no time in making her aunt’s joke a reality.

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The University of Wisconsin Badger Marching Band was contacted, and Trachtenberg was met with celebratory music as she exited the cancer center.

“This is great, this is great!” Trachtenberg says in the video below.

The video, posted to Facebook on July 20, has already been viewed over 385,000 times and shared over 7,500 times.

Watch Trachtenberg’s triumphant moment in the video below:

When Ann Trachtenberg joked she wanted to be escorted out of her last chemotherapy treatment by a marching band, little...

Posted by UW Carbone Cancer Center on Monday, July 20, 2015


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