To the Woman Who Taught Me About Being a Special Needs Mom

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Dear Mom,

I tell you all the time how much I appreciate you. I do what I can to show you that gratitude as often as possible, yet I always wish I could do more. 

You are the one whose guidance and love taught me to love myself the way I so comfortably do, and that is not a small thing. 

It wasn’t quick and easy for you, either. As a mom myself, now I know that.

When you adopted our brothers, all of them with special needs and big, sounding diagnoses for their itty bitty bodies, and loved them until they learned to love themselves, you were guiding me.

When you fought for legal custody of our two sisters who came from abuse, abuse that was sadly familiar to you and a cycle you insisted on breaking, and you loved them until they learned to love themselves, you were showing me.

While all eight of us were loved equally, without ever knowing how hard it was for you, you were teaching me.

Now, as the mom of four fantastic sons myself, I see how easily these lessons prove themselves in my own parenting. When my boys come to me comfortably with questions, when they ask for snuggles knowing I’m happy to give them, I feel a masterful mix of me and you in my parenting.

When I’m smiling to myself because of some fancy-dancy parenting maneuver I’ve managed to pull off, I’m also smiling at you.

And there have been plenty of fancy-dancy parenting maneuvers! When my son, Shay, wasn’t talking by age 4, when he was stimming and toe walking and insisting on forever being naked, you showed me the way to teach skills while embracing his uniqueness. You took sign language courses and brought home a fun new way of talking, taking advantage of engaging hand gestures placed near your mouth. He began to talk. I took the baton and ran with it, and taking your cue for creative posturing, I discovered fun ways to help him want to keep his clothes on.

When my son, Declyn, showed obvious signs of sensory challenges and a fear of eye contact, I hardly needed you to show me what to do, though I love that we did those things together. As a family we encouraged eye contact creatively, discovered ways to help him keep his food down (mostly!), visited playgrounds intentionally over and over — not pushing him to become socially comfortable but believing he could and celebrating each step of the way — until he became Mr. Comfortable.

Because you have not only helped my brothers in these areas but also hundreds of others around the world, my sons and I knew we were in good hands. It was a simple question of enjoying the work.

So thank you again, Mom. Please know that even when I’m not expressing my gratitude for everything you do, I’m building upon it.

I love you, Mom. You are my teacher, my friend, and even sometimes my student. Or so you tell me. Which I know is also a way of teaching me to be a student to my own children.

I’m forever grateful you never let us see that we were difficult. Life always felt fun while we felt supported. Which helped me do the same organically for my own sons.

This cycle of love is far superior to the cycle of abuse you were burdened to change. Thank you for changing it.

Your dedicated and loving daughter,

Tsara

The Mighty is asking the following: Write a letter to someone special in your life. What do you wish he or she knew? How has he or she made a difference? 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.

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When My Son Told Me Why He Threw Up During Speech Therapy

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My son and I have the best talks while driving around town. His first sentence came out in this car. I don’t know why he can carry on a conversation so much better on four wheels, but maybe the car has nothing to do with it. Maybe it’s the fact that he’s back there and I’m up here. No pressure to read my face. 

“Hey, buddy! Check it out. We are right by your old school where you took speech.”

“I know. Mommy, I have to tell you something. Remember when I threw up there?”

“I can’t believe you remember that… ick. Yes, baby. You were sick.”

“No. I wasn’t. I wasn’t sick. Everyone was trying to get me to talk. It was hard, so I threw up.”

I’m glad he couldn’t see my face.

I looked back on that day. No fever. I took him home and he was fine, but now I was the one who felt sick. Was it really that much stress? I can’t believe I never thought of that. I wanted to pull over and hug him. I wanted to tell him I was sorry. I wanted to explain that the doctors told me if he didn’t speak by a certain age, the words would never come. I wanted to tell him I refer to those years as the, “I don’t know what the hell I’m doing,” years. It had to be hard then, so it could be easier now.

It had to be hard for a tiny child?

Guilt overwhelmed me when I thought of what I really should tell him. Those other things were the truth, but so was this…

“You worked so hard as a preschooler because Mommy needed your words.” I wanted to tell him those early years scared me, more than today scares me and sometimes even more than the future scares me. I was afraid he was in there and would never find his way out. I would never know him. Yes, I wanted to help him, but I wanted to help me, too.

I couldn’t tell him this. He wouldn’t understand, and my tears would only scare him.

This is the part in the story where I’d usually tell the reader how I learned some big lesson and then tie it in a neat little heartwarming bow, but I can’t. Was it right to push him? I don’t know. I do know now that autism is not the sprint to the finish I hoped it would be at the time. It is a marathon you train for every day. If Colin never spoke, our journey would be different, but his heart would be the same. I know that now. The nonverbal children I have met over the last few years have taught me as much.

We sat in silence for a little while. I looked at him in the rearview mirror as he happily leafed through library books.

“You know that sometimes mommies don’t have all of the answers, right?”

“I know.”

I wonder how much of this parenting thing is going to involve learning to forgive myself. I wonder if every decision will feel like bricks on my shoulders.

Most of all, I wonder if the,“I don’t know what the hell I’m doing,“ years ever really end. Maybe they never will, but I know more than I did yesterday. Today, I’m holding on to that.

mom about to kiss son
Photo credit: Gene Rodman

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

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17 Tips to Make Thanksgiving More Comfortable for Kids With Autism

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Thanksgiving is a holiday that involves a lot of planning, but for many families, it goes far beyond turkey and hosting. For children on the autism spectrum, Turkey Day can be a chaotic and overwhelming day, so we asked parents in our community if they have any special tricks to make it more comfortable for their kids.

Here’s what they had to say:

1. “Arriving early to venues before any crowd or noise arrives helps tremendously. It allows my child time to acclimate and ease into the ‘chaos’ of the holiday.” —Tina Annette Erwin

2. “Don’t expect them to change their routine because you are changing yours.” —Stephanie Loubier Weiss

 

3. “An Xbox!” —Susan Roudebush Robertson

4. “We’ve learned to dress them for comfort, not the occasion. Our ‘holiday’ outfits are usually sweats or leggings and hoodies or soft tee shirts.” —Lauren Cockrell

 

5. “Dinner has to be at its normal time… no eating at 2 p.m.” —Alecia Rozanski Edmonds

6. “Have it at our house!” —Amy Elizabeth Kennedy-Bang

7. “Remember to let him enjoy the holiday his way. If he spends the whole time with headphones on and rocking in a chair, that was fine by me.” —Christy Vogel

 

8. “Prepping for a holiday event is similar to invading a country in our home. Mapping out escape routes, easy enters and exits, places to hide, sound proof equipment, diversions and distractions, not to mention bringing along a backpack full of arsenal (toys, electronics, food, drink). We start talking about Thanksgiving the second Halloween is over. I’m pretty sure a space shuttle launch requires less prep time.” —Brittany Van Arman-Miller

9. “We always bring food we know he will eat. It’s easier on all of us.” —Jennifer Roberts Bittner

 

10. “We’ve been known to have nuggets for them.” —Kellie Luke

11. “Make sure the iPad is charged and ready to go… don’t forget the charger.” —Melissa Cote

 

12. “We let our son tour the buffet before anyone else and without an audience. He can touch and smell suspicious foods and if he wants, taste. This has saved many meltdowns.” —Lindy Burnett

13. “We always plan to make a quick exit if it’s too overwhelming for her.” —Victoria Rusay

 

14. “Lots of prep telling him what to expect, where we are going (describing the location to help him remember if he’s been there before), who will be there, emphasizing people he knows.” —Elizabeth Barnes

15. “I put ketchup on his turkey.” —Breanne Guzman

16. “No matter where we are celebrating our holiday, we find a little spot away from the activities where [our child] can escape to to be alone.” —Lauren Swick Jordan

 

17. “I let [my son] take breaks through the day.” —Corvette Shannon

*Some responses have been edited and shortened for brevity.

Do you or a loved one on the spectrum have any Thanksgiving day tips? Let us know in the comments below.

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To People on the Autism Spectrum Who Struggle With Holiday Gatherings

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I love sports. I grew up playing soccer, basketball, football, and for a brief moment, I even ran track. Some of the greatest lessons I learned didn’t happen on the basketball court or the football field — they happened on the track.

A few months ago, in an effort to explain to someone how autism spectrum disorder impacts how I socialize with others, I gave an analogy that social interaction is like running sprints for me. I can do it but not for long periods of time. As helpful as that analogy was at the time, I must confess that I lied. Socializing isn’t like running 100-meter sprints — it’s more like running the 100-meter hurdles.

As an adult with autism spectrum disorder, I’m learning most people don’t have the opportunity to see my intense internal struggle with navigating social situations. If you want to really see me struggle, however, put me in a room full of family and friends during holiday gatherings. Just the thought of it scares me to death, so over the last year, I’ve learned to take a few lessons from the track and turn them into strategies for handling the “holiday hurdles.”

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1. Support

One of the first keys to being able to run well is to have good shoes. A few years ago, I tore my right Achilles tendon while playing basketball. Following my surgery, my doctor made me purchase athletic shoes that provided me with the proper support.

I’ve learned that living on the autism spectrum requires me to have support. I can’t run my race without support. My wife is committed to helping me navigate social situations by helping me feel safe, feeding me cues and clues and recognizing when I’m beginning to feel overwhelmed and stepping in to give me some relief. Before you head into the hectic holiday hurdle race, make sure you have the support you need.

2. Stretch

Anyone who has ever exercised knows that stretching before running is extremely important. Stretching makes you more flexible and can improve your performance as well as prepare your muscles for rigorous activity. Life on the spectrum often means holiday socializing can be scary, but try to warm up to the idea a few days in advance. I like to spend time mentally preparing myself to interact with people. Spend time alone, do things you enjoy with no interruptions and then slowly warm up to being more social.

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3. Steps

If you’ve ever watched a 100-meter hurdle race, then you’ve probably noticed the runners on the track warming up by jumping a few of the hurdles before the race actually begins. What they’re doing is actually creating a system for maximizing their steps. Jumping hurdles requires a system. Identifying your “lead” leg is crucial, because it’s the leg that goes over the hurdle first.

Here’s my point: Jumping the holiday hurdles is a little easier when you have a system. Determine your “lead” leg by working on your script in your head. It doesn’t hurt to have a few conversation topics ready, so you can comfortably engage with others for a few moments. When you’re jumping hurdles, every step is important, so spend time preparing yourself for the occasion by doing as much as you can to find out who will be there, what you will be expected to do and how long the gathering will last.

4. Start

Running a great race means getting off to a great start. When I consider spending time in large social settings, I try to get off to the best start possible. This means I try to start my day off with something positive, and when I actually arrive at a large social gathering, I try to start off the time with as much interaction as I can. I know myself well enough to know that I won’t feel like socializing after an hour. But if I get off to a good start by engaging people at the beginning, I feel more secure, and others feel they had an opportunity to spend time with me. This works great for me because after a big holiday meal, most people end up sleeping anyway, so I don’t feel as awkward when I need to slip away and be alone.

5. Stride

Jumping hurdles takes a ton of energy, so what you do in between hurdles is very important. A good hurdler has a decent stride in between hurdles. A stride is a long step, so depending on your personality and social capacity, determine a pace that works well for you. But by all means, take as long as you need in between hurdles. Don’t rush from one social activity right into the next. A good pace can actually protect you in the long run.

6. Celebrate

OK, so this one doesn’t start with an “S,” but it does make for a good ending. Running hurdles requires a good start, but it also requires an excellent finish. The holiday season is filled with sensory overload, social anxiety and mental and emotional fatigue, so have a plan for how you will finish the race. Have an exit strategy. Life on the spectrum isn’t easy, and lots of people won’t understand why you just can’t stay for another hour. But no matter how things turn out, learn to celebrate the fact that you ran your race and you ran it well.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease during the holiday season, and what would you say to teach them? 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

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The Different Kinds of Parents We Have to Be for Our Child With Autism

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We are the first family who will tell you the joys of our son, Kreed, and the way he sees the world. We are also the family that will tell you how incredibly difficult it is and scary it is to have a child/adult with severe autism and the self-injury and aggression that goes along with it. Kreed can communicate, but he still can’t communicate prior to a meltdown.

Tonight… tonight my arms hurt so bad I can barely lift them. Kreed split his lip, bruised his head and cut up his hands. He wanted to damage himself to somehow help the pain elsewhere in his body (migraines and peripheral neuropathy). Not to mention his low blood sugars we are always battling. And it is a battle. We do battle every day. Every. Single. Day.

We don’t know which Kreed we will get. Sometimes it’s terrifying watching your son self-injure himself, and you wonder if you are strong enough to protect him from himself and know that you could get seriously hurt in the process. And we have. Been bit, bruised, cut, sliced — everything.

For some of us families, we not only have to parent and teach, but we also have to protect. Not protect ourselves, but protect our child from himself. This is incredibly difficult knowing part of your job is to provide that protection. In those moments we aren’t parents; we aren’t the ones kissing the boo boos or snuggling and finding joy. We are fierce and strong, and sometimes have to do things we never thought we would do or knew we would have to do for their safety. No parent wants to think of that. But we have to. We have no choice.

He’s our son. And we have moments of joy, and we focus on his quality of life and finding happiness. But some days his body is so racked with pain due to his medical issues that there is no joy to be found that day. Most people with Kreed’s set of disorders would probably tell you they are in immense pain every day, and just waking up and being present is enough. Kreed does so much more some days without a hint of pain. But other days he’s in so much pain, we do battle.

So today is not a fuzzy, loving, storytelling the joy we found today or what an interesting way Kreed sees the world. Today was about a battle. About his pain. About his lack of communication. About what severe autism sometimes looks like and what we families have to go through.

Even un-screwing the lid to his peanut butter jar brought me pain, and I didn’t think I could do it. Getting Kreed ready for bed was painful and long and hard. Because even after he rages and destroys everything in his wake, we still have to pick up the pieces and move on. We have to be the shoulder for him to cry on, even after he’s tried to harm us. The moment it’s over, it’s over. Then we can go back to being parents. Sometimes it’s easy giving that shoulder immediately. Other days it’s hard and you flinch, fearing a bite instead. The fear can get you some days. Everything can get you some days. Some days are a battle, and you don’t even know if you’ve won. And some days are exhausting, and you don’t know how you will get up the next day and do it all over again. But you do. You always do.

Tomorrow we will wake up and try again. We will try to manage his pain and find what makes him happy. We will tweak things and adjust things and hope he comes out with a smile instead of a punch. Because that’s what we do. We are there to pick up the pieces, to love, cuddle, hug and be there — but also to be incredibly strong, fierce and brave for your child.

We don’t know which kind of parent we have to be every day, but we always do it with love and show him as much love as possible.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

Follow this journey on Kreed’s World.

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When a Dad Approached Us After My Son With Autism Hurt His Child

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The last two years since my younger son, now 6 years old, was diagnosed with autism, have brought lots of ups and downs and challenged our family’s way of life. For me, it was permeated with feeling isolated and misunderstood in most of my social experiences. I’m sure this is partly due to closing myself off to perceiving things differently, not through the painful lens of grief. But once in a while, that door would open, and people around me would humble and inspire me with their incredible wisdom and kindness.

This year, I feel indebted to a parent my son and I met at a local playground under not-so-happy circumstances, when my son unexpectedly lunged and toppled to the ground a girl much smaller than him who was drawing with chalk on the sidewalk. The girl’s father scooped up his daughter and looked at me as if asking a question. He said nothing; he didn’t yell at me or my son (which happened to us once before in a grocery store). He just waited for an explanation.

I apologized profusely and explained that my son has autism and that this behavior is new to us, and I was not able to predict and prevent it. Luckily, the little girl didn’t get hurt physically, but she was pretty upset. I helped my son apologize to her, and we quickly retreated to our car, where I just started crying. We couldn’t leave immediately because we had to wait for my other son who played tennis in the nearby courts.

The father and his daughter approached us. He inquired if I was all right and asked for help to explain the incident to his daughter. He said it was important to him that she didn’t think my son was a bad person. It was important to him that she feel comfortable around children with special needs. So we talked to her about how my son needs help talking to other children, how he loves drawing with chalk and probably wanted to join her but didn’t know how to ask. She happily went on to ride her bicycle, and we went home.

I don’t know how to convey the sense of responsibility, shame, sadness, anxiety, guilt and horror I feel as a parent when my child hurts another person. These feelings can flood me all at once, making it difficult to function well in the moment. It took me a couple hours to realize the extraordinary thing that happened when this awesome dad of the girl my son hurt approached us. I want him to know he made a difference in my life. I also wonder somewhat anxiously whether he recalls this event as positively as I do. I hope he does.

I’m so grateful to this individual — who was and is a complete stranger to us — for his kindness and understanding, and for his ability to actively express it. It gives me hope when I read stories about lawsuits by neighbors and families being taken off flights due to concerns about their family member with autism. I wonder sometimes if I’d be able to respond this way if I were in his shoes, and I make a renewed commitment to try not to judge, and to practice kindness and acceptance.

Egle Narevic's sons
Practicing gentle touch with older brother’s guidance.

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. Check out our Share Your Story page for more about our submission guidelines.

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