50 Pieces of Advice for Kids Whose Siblings Have Autism

602
602

If your family has just received an autism diagnosis, here are some very real pieces of advice from Estelle and Gavin, two “autism siblings.”

1. It will be very hard at times, but you will get though.

2. Even if you feel like he’s being annoying, make sure to go with the flow.

3. Always talk about the rules before you play a game.

4. Try not to freak out when he disagrees.

5. Don’t yell.

6. Help your parents by telling them right away when your brother starts to lose it.

7. Don’t let him be bullied. Tell your mom or your teacher.

8. Give him warnings to get him off the video game or stop watching a football game.

9. Always tell him where you are going; he doesn’t like surprises… even if it’s just the movie store.

10. Make sure he’s comfortable with what you do.

11. Help explain things if he needs help.

12. If he’s having problems, just be quiet and stand to the side.

13. Never say the “R” word.

14. Tell your friends so they understand your brother when they come over.

15. Try to find things you like to do together.

16. He’ll be annoying at times because he likes to touch. He just doesn’t have the words to say hi. Just be patient.

17. Don’t feel bad if he decides to stop playing with you all of a sudden and just walks away.

18. He doesn’t mean to hurt your feelings. Sometimes he just doesn’t know better.

19. Don’t let him get away with too much. Be sure to tell your mom.

20. Take a break from him and don’t feel bad.

21. Have your own space.

22. Be understanding of your parents, because they are doing the best they can.

23. Get used to him only staying at your birthday party for a little bit. It’s really overwhelming.

24. If you get sad, talk to your mom. She loves you just as much, even if it seems like he gets more attention. She wants to know that you are sad. She always makes it better.

25. Just get used to it, it’s not going anywhere.

26. He might break or ruin your stuff. It will make you sad and that’s okay. Just remember he didn’t mean to.

27. Try to get him to look at you. I get in funny positions trying to get his eyes to look at mine, and I think it’s important.

28. It won’t go away.

29. He won’t take medicine to make it better.

30. Like anyone else, he will have REALLY big poop sometimes. If he forgets to flush, go get your mom.

31. He might be sleeping when you’re awake or awake when you’re sleeping.

32. He’ll sometimes have problems spitting out what he’s trying to say. Just try to be patient.

33. He doesn’t know he has bad manners. If he’s eating his cereal loud, just eat yours louder. Then when he looks at you funny, tell him you thought it was a contest. That will make him laugh and remind him to close his mouth. There are lots of tricks to help him learn to be better without making him feel bad.

34. He might say something embarrassing in the middle of church. Just smile.

35. He also might hang on your mom during church – it’s okay, it looks weird, but it helps him stay calm.

36. He’ll talk all the time about the Minnesota Vikings. If you’re not interested, just pretend you are paying attention and say “uh-huh” every now and then.

37. He’ll interrupt you, but he’s not doing it to be mean. He doesn’t know there are rules to having conversations. You can teach him some rules though – like talk time and think time. That’s what my mom made up.

38. Don’t move his stuff. He knows right where everything is. He’ll freak out.

39. You have to learn to be very understanding.

40. You will learn to have more patience with other people – especially if they are unique.

41. You will stop paying attention to other people who are different.

42. When he’s asleep, DO NOT wake him up.

43. When he gets loud in public it can be hard. You may feel embarrassed, but you will get used to it. Just ignore other people.

44. You have to learn how to walk away, a lot.

45. You just have to be understanding and try really hard to have patience.

46. He doesn’t pay attention to cars, so you might have to help your mom in the parking lot. Help her make sure he doesn’t get hit by a car.

47. Always help your parents keep an eye on your sibling and help keep them safe.

48. Sometimes it’s weird because if you’re younger (like me), you may be better at some school things. You don’t need to talk about it, because it will make him feel sad.

49. Sometimes, just ignore him.

50. Always, always, love him.

autism siblings the mighty

This post originally appeared on 366 Days of Autism.

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.

602
602
JOIN THE CONVERSATION

The Unexpected Lesson I Learned From an Autism ‘Checklist’ on the Internet

707
707

Dear Autism,

Until just a few years ago, I’d heard your name, but I’d never met you. I had no idea what you were about. All I knew of you was that you were cruel, and you didn’t show yourself straight away. I once heard that a child could be developing normally, reaching every early milestone, and suddenly you would appear, robbing them of their smile and their first words, leaving them vacant and emotionless. I couldn’t imagine anything worse than you, Autism. I didn’t think I could cope if you came and took my child.

Then, one day, I was browsing the Internet, and I saw an article about how to recognize the early signs you were present. As I read the “checklist,” my blood ran cold. I suddenly knew all my little niggles about my son, James — that he didn’t respond to his name, didn’t bring things to show me, didn’t point, wave or clap — were down to you.

But… it didn’t make sense. James was affectionate and loving. He made eye contact with me. He was always laughing, and he loved to play rough and tumble. I never suspected you, Autism, because I didn’t feel “robbed” of my child. My child was perfect.

James Gaunt

It turns out I had you all wrong, Autism. Actually, that wasn’t completely my fault because a lot of people misunderstand you. I’m not saying I love everything about you, but I’m grateful for you.

Because of you, social interaction doesn’t come naturally to James. So when he gives me a kiss or a cuddle, I know he really means it.

Because of you, James doesn’t really possess the ability to be manipulative or deceitful. You preserve my child’s innocence.

Because of you, milestones mean more. We’ve had to work harder and wait longer for each and every one of them. We take nothing for granted and celebrate every achievement no matter how small.

Because of you, I take less crap from people than I used to. I used to be the sort of girl who meekly nodded along and never rocked the boat — it was too important to me to be well liked. You’ve brought out the fighter in me and help me let go of my social hang-ups.

Because of you, I get to be a stay-at-home mom. Autism, I loved working, especially getting dressed up and drinking cups of tea while they were still hot, but I didn’t have the work-life balance right. I was missing out on my boys. You changed everything. I wouldn’t have chosen to give up work, but in hindsight, I’m grateful every day that you took the decision out of my hands.

Because of you, I’ve made a difference. Because I misunderstood you, Autism, I started writing to to help others see the real you.

Autism, I’d never entertained the idea that you might be part of my life. I thought of you as something that happened to other people, something to be feared.

But perhaps it’s the opposite of cruel that you didn’t reveal yourself in the first year of James’ life. Because you kept yourself hidden at first, I’ve never thought of James as anything other than normal. I don’t think of myself as this “strong” person who has to “cope.” I’m just a mom doing the best for my little boy.

Autism, I hope you can accept my apology for judging you before taking the time to get to know you. From now on, you can rest assured I’ll be fighting in your corner.

Sincerely,

James’ Mom

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a [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.

707
707
TOPICS
JOIN THE CONVERSATION

The Practice That Helps Me Get Along With My Deceitful Disorder

30
30

Dear Cerebral Palsy,

I’m frustrated with you. I feel you are deceitful.

You deceive me by telling me I’m different from everyone else. You deceive me by telling me no one understands me. You deceive me by concluding I do not deserve love and support because articulating to others what I need is difficult at times. You deceive other people around me into thinking I’m drunk, that I’m not interested or that I’m impatient. You hide my sincerity, curiosity and interest from people with whom I desperately want to connect. It seems I always need to rest and recover because you’re constantly contracting my muscles. You squash my hopes and dreams.

Well, I want to reconcile these feelings with you because I don’t want to fight anymore.

It seems we’ve been fighting all my life. I constantly try to minimize your role in my life, but you always find a way to force me to attend to your needs. I’ve played in youth hockey and soccer leagues. I taught myself how to drive. I worked constantly on my hand-eye coordination, I went to college, I moved to nine different states and I’ve lived on every coast in the U.S. These were all attempts to get away from you. I’ll be 32 soon and am considering retirement because you just won’t shut up! I wish you would leave me alone.

Well, I guess if you haven’t left by now — if you haven’t left after all the concerts, ball games and road trips I’ve dragged you through — maybe you won’t leave at all.

Look, because you’re in my life, I will probably die sooner than most because of all the stress and tension you put on my body. I still have things to do in this life, so can we work together to fully realize the potential of the body we inhabit?

You seem to like yoga, green leafy things and coconut oil. You seem to genuinely inspire people — not that pitiful, egotistical inspiration crap, but real transformative inspiration — when we practice yoga. I like yoga, too. Despite our hostilities toward each other, would you agree that we get along when we practice yoga? You like it because it brings oxygen to the blood and brain, larger muscles release from their chronically contracted states and other weaker muscles have a chance to engage and grow strong. I like it because I can tune into parts of my body that you hide from me, regulate my hormones so I can sleep well and digest food normally and connect with other yoga practitioners who are also dealing with their own deceiving disabilities. Yoga is about the only time we’re moving towards the same goal!

jeff-in-shoulder-stand

You know, cerebral palsy, I’m sorry. It seems I have not taken the time to truly understand you. I should be embracing you, not minimizing you. I’ve spent all these years cursing you, thinking you isolate me and tell me I’m not good enough. In writing this, I understand feelings of isolation and inadequacy are just habitual responses. Lots of people, abled and special-abled people, struggle with feelings like that routinely.

Yoga is the cessation of the fluctuations of the mind. When we’re able to quiet our minds, we experience reality directly and without judgment. We understand that we’re not our appearances and commentary of the mind is as valuable as advice from a hyperactive 3-year old.

I reckon we’re not perfect, so our purpose together must be to understand our imperfections, restrain our habitual responses and learn to return to that space beyond the mind, a place that seems so infinite and bright. Let’s make a pact to rejoice with happiness, be compassionate in the face of sorrow, become friends with the virtuous and equanimous to vice. Let’s promise each other to have faith in what we need to do, vigorously pursue our goals, develop memory free of habitual responses and maintain awareness of each other.

Above all, lets just be gracious we have each other. We made it this far, let’s see how far we can go working together!

Sincerely,

Jeff

 

This post originally appeared on JeffWilkerson.net.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog [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.

30
30
JOIN THE CONVERSATION

Why Our Life With Epilepsy Is Just a Little Hard

44
44

59039_10100513066357721_4700457_n I’d like to share a little secret – the reason #lifewithepilepsy isn’t hard hard. Just a little hard.

I’m sharing this because all of a sudden family and friends are offering to buy airline tickets and come help, and that’s not at all what I intended. You guys are sweet, but remember? I only ask for help when I’m wearing Hammer pants.

Now. It took me years to find this secret, so don’t think I’m going to give it away just like that. Let me first tell you how I discovered it.

Awhile back, I took a course to become a certified hypnotherapist. I thought I wanted to help other people, but in hindsight I realize I needed to help myself first. There’s a lot of complicated baggage to sort through when you transition from not being a special needs parent to suddenly being one. And there’s no training program to prepare you for this stuff. Life just happens. You make it work.

When it was my turn, my instructor deftly steered me into hypnosis, then stepped aside and let my subconscious mind take the reigns. At some point, she snapped her fingers, and I found myself standing beneath the eaves of a majestic cathedral, inhaling crisp mountain air and looking out over treetops as I waited for my companion to arrive.

I felt calm, settled, still. He would come. When didn’t matter.

(Who was this companion, my ego wondered?)

Soon I saw the top of his head bobbing along the stone path toward the cathedral. A young boy, blond. Wearing a red wool sweater, hand-knit and unevenly hewn.

He ran with perfect ease. Not because he was late or I was waiting. But because he was so excited to meet me. He couldn’t wait to embark on the adventure we had planned. And he knew exactly how it would turn out.

No hesitation. No apprehension. Just joy.

The next image I saw was a baby in utero, sucking his thumb.

My baby. My Bunz.

That’s when it dawned on me: He came here willingly. And not just willingly. Eagerly.

That was powerful.

Now, depending on your belief system you’re probably sitting there thinking, hmm. Nice metaphor. Or wow! Past-life recall! Or in the words of Aunt Esther – you ol’ heathen!

I don’t know about any of that.

What I do know is that it was a major turning point for me. It opened my eyes to a new level of awareness that Bunz is so much more than what we see. The image of him running to meet me – and his excitement to come into this life, despite all its challenges – was so powerful. Because in real life, he doesn’t run. And it’s hard to imagine that he would choose these challenges. You know, if he had a choice.

So the secret is that he is Glorious. Whole. Complete. Even in his incompleteness.

Perhaps Bunz and I knew what we were getting into before we entered this life. Perhaps his spirit is even older and wiser than mine. Perhaps we’re here to learn.

Or perhaps it was just a metaphor.

Sometimes I get carried away.

This post originally appeared on Team Bunz.

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

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

44
44
TOPICS
JOIN THE CONVERSATION

The Heartbreaking Moment I Realized Why My Daughter Was Crying

197
197

My daughter is growing up.

For those close enough to witness her descent into “tweenager” this summer, this may as well be an announcement from Captain Obvious.

I hold the lead on height (but for perhaps only another week or so), she can no longer wedge her giant feet into my shoes, and we’ve taken several shopping trips centered on deodorant and *gasp* training bras.  And though, at 11, she still counts American Girl Dolls as prized possessions, I fear the days are short when a typical bathroom hazard is walking in on naked Barbie bodies littered about – reminiscent of a CSI Playschool episode.

Madeline has entered The Middle.

This is an interesting conundrum on many levels as a parent – or for that matter, a child. It’s well-documented in every Molly Ringwald movie ever made that the years ahead are sure to hold a share of drama and turmoil. But in our family, this transition is steeped with additional meaning.

One of the most heart-breaking moments of the last year was an evening I found Madeline quietly sobbing in her bedroom. I held her close and she finally divulged that she was terrified her budding new breasts were cancer. And she didn’t want to tell me because she was afraid it would add more stress to our family.

I did this to her.

It is insurmountably unfair that Maddie must learn to navigate her changing body, hormones and middle school –  with the added fear of something like cancer. And there are days when the knowledge that I have added these fears to her world is nearly too much to bear.

heather caro the mighty

At a time when Madeline needs to see that puberty is a normal part of becoming a woman – I am probably the least able to provide that reassurance. Cancer treatment caused me to go through chemopause, stripped me of my hair and breasts. It’s a bit like going through “reverse” puberty – and just as awkward and painful as I remember it the first time. But though the transitions are in opposite directions – this experience has allowed me to remember just how intense and scary the process can be.

Learning to be your own person is never an easy process, and I’m suspicious of anyone who says their teenage years were the best of their life. But hopefully, if I do it right, I will arm Madeline with something much more powerful than the reassurance that our bathrooms will always be stocked with Kotex.

I will teach her real women have curves – or they don’t. Real women have long hair, short fuzzy hair or no hair. I will teach her that being active is important – but for the joy of it and not an attempt to fit some perceived societal mould. I will teach my daughter that her greatest assets are her brain, her humor and her ability to persevere.

Most of all, I will teach her that finding yourself is a process – something that doesn’t end once you “grow up.”

And perhaps it is a great gift after all that we are able to learn (and re-learn) these lessons together.

This post originally appeared on My Life, Distilled.

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.

197
197
TOPICS
JOIN THE CONVERSATION

When I Feel Like I’m Bearing a Grudge Against My Kids’ Disabilities

147
147

Sometimes when I’m scrolling down my Facebook feed, I spy a cute picture of someone’s child. Usually it’s a captured moment of something fun and typical for that child’s age. The picture that caught my eye today was of a 5-year-old playing in a basketball game. At first, it reminded me of my oldest son, who’d started playing basketball in kindergarten at that same age. Fond memories of little sweaty boys scrambling to get the ball with looks of intense concentration and joy on their faces flashed through my head. Then my brain stutters…

Wait a second… that boy in the picture is the same age as my son, Leo. Like less than 24 hours older. Immediately my heart clenches and tears sting my eyes. I’m suddenly thinking about how that could’ve been Leo, should’ve been Leo in the picture. If autism hadn’t snatched him.

Every time I think I’ve come to terms with having children with a diagnosis or two (or four), I get reminded subtly that I haven’t fully embraced and accepted every single aspect of my children’s disabilities.

I honestly think I’m bearing a grudge against all the disabilities entrenched in my life.

Since I can’t live in a bubble or a cocoon my whole life hiding from these realities, I need to exorcise this grudge. Pretending it doesn’t hurt to see the normalcy and successes of my children’s peers was a quickly learned coping mechanism, but I’m going to be real for a moment here.

For me, it sucks to see the “normalcy” sometimes. The pain can catch you unaware, slicing through your body with bold precision, and sometimes you can’t even catch your breath from the heartache coursing through you. Thoughts swirling in my head as the ache encompasses my soul: Damn you, autism. Damn you, Down syndrome. Damn you, sensory processing disorder. Damn you, apraxia of speech. Damn you all for making it harder for my children to succeed. Damn you for making them scream. Damn you for making them cry. Damn you for making them struggle to stay healthy, to speak, to walk, to make friends, to sit in a classroom calmly, to be included and to be content. And damn you for making me feel weak and inadequate because all I want to do is fix it for them, and I can’t.

So I’ve thought about it: How do you rid yourself of a grudge? I’m sure there’s been oodles of books written on this subject, but my particular grudge is more visceral and not easily forgiven, forgotten or let go. The reality of a disability is always present, always in the forefront of our lives. We don’t forget my daughter, Lily, has Down syndrome and autism. We don’t brush aside the seriousness of keeping her healthy. We see Dasha, who also has Down syndrome, determined to fit in with her peers while those same peers are struggling to even understand her speech. It’s hard to ignore the fact that my almost 6-year-old son, Leo, still can’t talk well. His cries, screams and shouts remind us daily of his frustration, and of course there’s his autism blanketing his every move, his every social interaction and his every thought.

I’ve done well in the past celebrating the little victories. What would seem like small successes to most can be huge for us. It’s progress, and we love progress. Progress means we’re closer to obtaining a goal. Baby steps. Huge leaps and gains are few and far between so we focus on the little triumphs. Like cheering when Dasha did well in dance class instead of misbehaving. Enjoying Leo saying, “I want corn chips, please” appropriately while ignoring the backwards “please chips corn want I” whispered immediately afterwards. Watching Lily getting on the bus without fighting us every step of the way and her sweet smiling face greeting us every. single. morning. Being awed when Reagan gets a 32 on his ACT and not focusing on the immature “incident” with his twin brother at school during class where he overreacts to the teasing his twin doled out. And praising Kaelan for remembering to feed his reptiles without being reminded and doing well during his latest drive-time with his driving instructor instead of focusing on the negative verbiage coming out of his mouth.  (I should note that the lines between comparing a teen and a teen with autism get blurrier every day).

I think back to the days before Facebook and other social media. I was buffered from noticing the differences between my kids and other kids their ages. But it’s been harder this time around seeing the Facebook world tout their “Facebook” lives with all their fun-loving, typical family activities. I myself always err on the side of optimism on Facebook. Because really who wouldn’t rather see one of Leo’s spellings or a picture of Dasha in dance class than hear about one of Lily’s latest sh*tastrophes?

So I think the first step I need to do is to forgive autism, Down syndrome, apraxia and sensory processing disorder (plus all the other unmentioned diagnoses) for existing in my children and making many aspects of their lives so much harder for them. I guess my real quandary though is how do I forgive or cease to feel resentment for something that at times is so distressing?

Well, I could remind myself how some of the many traits I adore about my kids wouldn’t be a part of them if they were free of their disabilities. Like how Lily’s and Dasha’s smiley moon eyes and joyful exuberance light up my world. Or Leo’s stilted request for a kiss even though he’s barely verbal. And I suppose some of their more advanced talents may not have flourished if not for their disabilities. For example, Reagan and Leo read and spelled by the time they were 2, and Dasha is quite skilled at American Sign Language. Obsessive-compulsive disorder (OCD) can have benefits particularly when mastering knowledge about a certain favorite subject. So I guess in a way, I’m holding a grudge against a part of my child that they have no control over.

Another idea is to not let the disability overtake my perception of my child. Lily, Leo, Reagan and Kaelan have autism, but I need to remember autism doesn’t have them. They are so much more than autism with so much incredible potential. This could be easily said about someone with Down syndrome as well. Lately I’ve been focusing on the disability more than my children as a whole. I need to alter that way of thinking and change my perspective.

Secondly, I need to accept that the diagnosis or diagnoses will always be a part of my child. Always. This is a tough one because many of the diagnoses we’re dealing with change or evolve as the child ages. The hardships brought on by their disabilities can be seen like mountains and valleys. Some are huge and seem almost unbearable while others are just blips on the screen barely making a dent in the scheme of our lives. It’s recognizing the differences and not letting every difficulty or the comparisons of other’s lives via Facebook or at the elementary school’s winter party escalate into a mountain when it should just be a molehill.

I’ve recently started going back and rereading all the happy, uplifting posts on my personal blog. All the fun times and the gratifying or silly Instagram pictures to remind me how good we have it during some of those low moments. It’s too easy to go to the dark side in moments of frustration, fear and irritation and focus on the negatives, but I know in my heart how truly blessed we are to have these seven amazing, unique kids.

liz roush

Next, I need to forgive myself for feeling this way. Too often guilt comes into play when we feel anger, resentment or listen to the why me? ringing through our heads as we’re cleaning up another mess of bodily fluid, going deaf while the child flips out over the phone ringing because of his sensory processing issues or once again arguing with a teenager on the spectrum who blatantly and without remorse ignores your rules because he thinks they’re illogical, especially now that he’s officially 18 and therefore an adult.

Finally, I need to find a way to endure those in society who deem my children not worthy of acceptance or inclusion. To witness such fear from others who are terrified of having a child like mine is understandable to some extent but also quite sad. The outright disrespect and bullying that goes on against individuals with disabilities scares me to no end, especially as my kids age and gain some independence. I think these reactions bear heavily on my heart and help fuel the grudge I’m bearing. I do see these misperceptions slowly changing around me, but the change is sluggish and conditional. The community as a whole has a long way to go in changing erroneous ingrained beliefs and removing the stigma about disabilities. Only then can the fear and the contempt be removed and true acceptance become a reality.

Side note: Please let me be clear that I don’t resent anyone’s pictures or status updates of happy or exciting events in their lives on Facebook. I truly enjoy witnessing your joy, but this was just something I needed to write about to help me deal with my harboring grudges and perhaps bring awareness to others who may be in the same spot I am with their child’s disability.

This post originally appeared on Our Version of Normal. You can follow this journey on Facebook here.

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.

147
147
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.