25 Ways My Family Defines Autism

397
397
0

This is what autism is for my son, for me, and for our family.

1. Autism is why his tantrums seemed so much worse than the other kids.

2 Autism is why he wouldn’t look at me or respond to his name.

3. Autism is why some things are so hard for him — noises and sounds, connecting with the other kids.

4. Autism is why it has always been so hard for him to sleep.

5. Autism is why he’s clueless if you try to play pretend.

6. Autism is why he just can’t adapt to big changes.

7. Autism is why I need to be strong.

unnamed-2

8. Autism is why I need to ask for help, and accept it.

9. Autism is why I need to check out and know it’s ok to take a walk or go workout.

10. Autism is why I need to be proactive and regulate his sensory system, because his needs are different than others.

11. Autism is learning why for me it’s important to be balance and a career. I can be a better mom if I have all of myself.

12. Autism is the moment I knew, really knew, how important early intervention was.

13.  Autism is knowing what amazing people there are out there to help teach my son, and  help teach me how to help my son.

14. Autism is watching him walk through the zoo and hold a little girls hand and give her a hug, just like all the other kids, and knowing it’s because I taught him how.

unnamed-1

15. Autism is why after years of trying to get my son to use a spoon and eat independently, I realized a video could show him better than I could. Video modeling is huge.

16. Autism is why going on a gluten/caisen free diet could make huge changes in mood and language even though all the studies aren’t necessarily conclusive.

17. Autism is trusting your “mommy instincts” for what is best for him — from school choices to diet to simple things like watching television. And knowing when to not listen to even the best doctors’ advice.

18. Autism is knowing it’s time to stop being so serious and laugh and play. Even if it means wearing a cape and jumping off the furniture.

unnamed

19. Autism is why some social things just aren’t worth doing.

20. Autism is being able to change. Thanks to the early intervention we are now able to do things we thought never possible.

21. Autism is thinking he would never call me mom, and him proving me wrong.

22. Autism is why simple pictures can help him express his needs and develop the verbal language along with it.

23. Autism is learning and sharing from other moms and other children. There are so many inspiring people.

24. Autism is knowing I have a beautiful, special boy that will continue to amaze me every day.

25. Autism is knowing I was meant to be his mom, because I believe God gave me the strength to be.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

397
397
0
TOPICS
JOIN THE CONVERSATION

What My Brother Has Taught Me About Unconditional Love

25
25
0

I am a firm believer that everyone is in this world for a reason. While we may not know what that reason is, we all have a purpose. Peter is definitely no exception. Peter is my older brother, the middle child, and by far the coolest 30-year-old that may have ever lived.

He was born extremely premature, and spent his first few months in the hospital going through various surgeries. The doctors who cared for him never would have imagined the impact he has had on me, my family and everyone who knows him. According to those doctors, he was never going home, and wasn’t going to live.

While doctors and specialists are typically very smart people and save lives daily, they can’t predict the will to survive. In my mother’s house, there is a sign that says “We don’t believe in miracles, we rely on them.” I have learned to believe that just because a situation is bad at the time, the result may not necessarily be bad as well. Peter was said to never speak, eat (except from a feeding tube), and if he were to live, he would be a “vegetable.” I have learned that you need to have faith because as children, we would play, argue, yell, and our mother would have to always tell us to quiet down. Now he will talk to me on the phone, and he loves to giggle! And let me say this, that boy loves to eat!

cerebral palsy the mighty

I am four years younger than Peter, and while growing up, I have never seen him as different, but only as my big brother. As I continued to get older, it was the same as I met other people with various disabilities. Because of my brother, it wasn’t in my nature to be judgmental of people just because they were different in any way, not only those with disabilities. I went on as an adult to work with individuals who have disabilities.

In his own way, my brother has taught me so many things. Things that are important in life. There are so few people who love unconditionally. Everyone is capable of love, but rarely do they love everyone with absolute unconditional love. Peter doesn’t need something from someone to love them. He just does, and he loves with such passion. I try to love the way he does. I want to love unconditionally.

I have always thought that if I can try to live as my brother does, I would be an almost perfect person. If only the doctors could see him now, and hear what people say about him, and how he impacts people, they wouldn’t believe it. Rather, they had thought he would be more of a burden, or make life harder. In fact, he has improved my life and how I live it. He is my teacher, my best friend and he is my brother.

brother with cerebral palsy the mighty

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

25
25
0
JOIN THE CONVERSATION

When a Man Restocking the Produce Section Came to My Rescue

16
16
0

I want to give a shout-out to the superhero restocking the potatoes in the produce department.

You probably don’t remember me. You were just doing your job, and it was about 10 years ago now. But, your kindness made a difference and frankly saved the day for me back then.

We were having a good day at home when I realized I needed to run to the store for a few items. My son was 4 at the time and he has autism, so the grocery store can be an overwhelming experience for him. In fact, I’m pretty sure I had never taken him to the store by myself and without Plans A, B and C in place.

I’m not sure what felt different about that day and why I decided to “wing it.” But, I was quickly reminded why we are a “backup plan” family. As my son and I strolled through the parking lot hand-in-hand, it felt like a huge victory. There we were, just walking into a store like all the other families. We stopped in the lobby and I asked my boy if he would like to ride in the cart or just walk and we would carry a small basket. Communication can be difficult for him, so we went over the choices a few more times and he decided, “No cart.”

We shopped for a short time, putting a few small items in the basket. Then it happened — meltdown in Aisle 5. Maybe I had misunderstood him and “No cart” really meant “Cart” or maybe he had just changed his mind. In any case, his frustration escalated in the produce department and before I knew it we were both on the floor and I was strategizing the aforementioned backup plan.

I’m sure other shoppers were probably staring at us, but I honestly didn’t notice them. I was focused on my son and how I could help him. I knew I couldn’t leave him to get a cart, but I also knew trying to get him to come with me would upset him more. I took some deep breaths and then I heard, “Is there anything I can do to help?”

I looked up and saw a man that had been restocking the produce a short distance from us.  I told him that if he could just bring us a cart, he would be my hero. He said, “Absolutely” and proceeded to the front of the store to retrieve what felt like a golden chariot at this point.

As I was calming my son and getting him settled in to the cart, my produce hero said, “He’s a good boy. I know he’s a good boy.” And while I also knew he was a good boy, it sure felt good to hear it from a stranger that day.

I still think of that day, 10 years ago, when I enter the grocery store today. It helps me realize how far we’ve come, and reminds me to never underestimate the little things people do for you.

They can be kind of a big deal.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

16
16
0
TOPICS
JOIN THE CONVERSATION

5 Ways Autism Has Transformed My Marriage

133
133
0

As I sat down to write this article, I had a serious thought. I wondered if my husband would mind if I revealed any of the inner-workings of our marriage. I mean, shouldn’t our marriage be a private matter reserved for the two of us? And then I laughed and laughed.

Because the reality is that privacy has largely evaporated for us, and part of this is related to having a child with autism. Or a child in general, actually. This dwindling of privacy began when I was 20 weeks pregnant; the midwives were concerned that my amniotic fluid might be leaking, and they met us at the hospital. The midwife couldn’t find a proper medical light thingy to conduct the, uh, assessment, so she instructed my husband to angle a rickety lamp at me instead. I was horrified. I now label that day as the day my privacy began its decline.

From that moment onward, our relationship, increasingly exposed to the elements that come from moving across the country (twice), finishing a Ph.D, getting new jobs and having a child with disabilities, has been sunburned and frostbitten. But thankfully, it has survived.

But, sadly, privacy and emotional monogamy didn’t make it. By emotional monogamy, I mean the idea that your spouse is the first and primary person with whom you share your emotions. That door has been flung wide open — it takes a village to make our marriage work.

Why has this happened, you might ask? There are five key reasons:

1. It can be really hard, anxiety-provoking stuff for both people. There is no “rock” in this situation — both people are under a lot of stress. I cannot always lean on my husband. He’s thin and tired and he might fall over (kidding!). But seriously, imagine trying to lean on someone who’s already hunched over. We need other people to prop us up. We share a lot (probably more than they want to know) with friends, family, therapists, hairstylists, online groups, colleagues and so on. It keeps us vertical.

2. Even when we don’t verbally share them, our emotions are written all over our faces. At least they’re written all over mine, anyway. Poker-face feigning is low on my priority list. I’m now proudly channeling my late grandma, a woman who used to let it all hang out there. She said what she felt, and it used to mortify me: “Show some decorum, Grandma.” Meh, decorum is overrated.

3. We constantly repeat our personal information to more people than I can count. I have lost count of the number of health professionals who have asked extremely personal questions about our health histories, our marriage, our decisions and other statistics they could just (for the love of God) read about in the file folder they’re holding. I just love retelling and reliving these personal details on a regular basis. Ciao privacy.

4. And then there are the social workers and bureaucrats who become part of your life. These people are supposed to help you navigate various disability resources and services, but they end up coldly intruding into your family as a rite of passage to access said services. Nothing feels quite as humiliating as crying in front of a blank-faced stranger as he rolls through questions about your child, your mental health, your marriage, your support network and so on. But do you want help for you and your child? Sign away some of your privacy.

5. If you run a home therapy program, your house converts into a therapy center at least five days a week. And our apologies, but we have argued in front of our son’s therapists and greeted them with a palpable tension in the air. It can’t be helped — our home is our only real place of semi-privacy. His therapists help our marriage and family all the time, though. They teach our son, share in his accomplishments, troubleshoot with us and even provide respite so we can have occasional date nights.

Obviously, the diameter of our marriage and family circle has widened — and it needed to. While my husband and I do the day-to-day parenting of partnering, there is also a team of people involved in keeping us afloat.

So, there you have it. Autism, for better or for worse, wades into our marriage all the time. Often it does so in ways that attract good things to us, like supportive friends and family and wonderful people we would never have known otherwise. Yet it can also make us feel exposed and encroached upon. Most days we can find that sweet spot that comes with balancing these realities, and other days are harder.

But that’s (my) marriage and autism. It’s complicated, and it includes a few more people than I imagined, but it’s a damn good team.

Barker-Brown Family

A version of this post originally appeared on Project Bearings.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

133
133
0
TOPICS
JOIN THE CONVERSATION

The One Question I’m Glad I Asked My Son

617
617
6

Every six months, my son, Caleb’s, physical therapist does a re-evaluation. Caleb’s progress over the last few months is discussed and goals are reviewed. I’ve always hated therapy evaluations, but I understand they are necessary for insurance. Therapists have to be able to show that there is progress and evaluations make that possible. Currently Caleb has a therapy goal of being able to walk in his KAFOs for five minutes without stopping.

Caleb can do it… but he hates it. He doesn’t like walking with his KAFOs. He doesn’t like walking. It’s hard, awkward, and cumbersome. Honestly, it’s not functional. It’s simply walking for the sake of walking. He hates it.

As we are getting ready for a therapy re-evaluation next week and knowing that we will have to set goals, I asked Caleb if walking is important to him.

His answer, without hesitation: no.

Walking is not important to him. He’s 9 years old and I think he is old enough to be a part of his goal planning. He should get a say. And he says “no” to walking.

I get it. I really do. Walking is really hard work for him. And he needs a lot of support to do it. Even when he was walking really well (before the tethered cord surgery three years ago… wow, has it been three years?!), he would choose his wheels over his walker when given the choice. After that surgery, he lost everything. He had to start all over. He’s had to work so hard to gain back even some of what he lost.

I was hopeful that he would gain back the ability to walk but then weeks turned to months… and now years. I’m not so hopeful now. And honestly, I’m OK with that. I’ve never had a problem with his need for a wheelchair. I love his wheelchair. It is independence, speed, confidence and mobility. It is a blessing.

I’m OK if he never walks again. But I want him to be OK with that. I think he is. Walking isn’t important to him. I respect that. I’m actually relieved to hear him say it. I feel like a weight has been lifted.

I think he felt the same way.

I’m glad I asked.

This post originally appeared on Beyond Measure.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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.

617
617
6
TOPICS
JOIN THE CONVERSATION

The Bus Driver’s Comment That Made Me Rethink the Way I Treat My Daughter

12
12
0

“They can do a lot more than we give them credit for.”

This was the comment that my daughter’s bus driver made one day as I was helping my daughter get on the bus to school. It was a seemingly innocent comment, but it really made me think. Am I not giving my daughter enough credit for the things she can do, or am I expecting too much of her?

In case you’re curious, this was in regards to my daughter holding the hand railing when getting on the bus in the mornings. Initially, I had been pretty much lifting her into the school bus. After all, that first step is steep. It can be a doozy.

It was just the day before that comment that the bus driver lamented on trying to get all the children to hold the railing, if at all possible. It seemed like a reasonable request, given the circumstances. My daughter is fairly mobile. In fact, despite her autism diagnosis and developmental delays, her gross and fine motor skills were almost always on par with other children her age. This was one area of which she always excelled.

Of course, she handled this task perfectly. I moved her toy pig, her most beloved possession, to her other hand. I placed her hand on the railing, and sure enough, she used the railing exactly as intended. This isn’t to say that she didn’t need me behind her should she fall. This also isn’t to say that I don’t basically need to remind her every day to hold the railing. It’s only to say that the ability was there. If given the support, she was able to accomplish this task.

After her bus drove away, I contemplated the situation a little more. How often do I do this to my daughter? The honest answer is probably quite a bit. My response to her school bus driver’s comment, by the way, had been very simple and direct. I responded back that sometimes when they’re so little, you just want to protect them. Especially when they have special needs. I even hugged myself to demonstrate what I meant.

The world is a very unforgiving place for those who are different. My daughter has already experienced judgment from not only her own peers, but even adults. It’s a little sad to have to explain to another 3-year-old why your child doesn’t speak as well as them.

It’s somewhat disturbing when you see a 3- or 4-year-old giving your child a snotty look, or purposely avoiding her. The absolute worse is when it’s an adult doing these things.

I worry. I worry she won’t fit in. I worry she’ll be made fun of for not being a cookie-cutter version of every one else. I worry she’ll have no friends. I worry that she’ll have no one attend her birthday parties, just like the stories I keep reading over and over again in the news. Mostly, I just worry.

As all of these thoughts are racing through my mind, something finally hit me. Perhaps, as with the task of using the bus railing, I’m not giving my daughter enough credit. It’s possible she’s made of tougher stuff than I realize. Maybe she’s stronger than I’m able to understand.

I may not be able to protect her from everything, but I can be standing behind her should she fall. With proper support, it’s very possible that she could accomplish the very things that I worry so much about. If not, then I’ll still be standing behind her, or waiting nearby should she need me.

Can my daughter accomplish a lot more than I give her credit for? I don’t know. Maybe. I’m just going to have to take that first step, and let her try. I just need to watch that first step. I hear it can be a doozy.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

12
12
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.