Motherhood

Autism: 5 Things I Want You to Know

Ladydee’s note:  This is a guest post by a member of my community, Lenore Koppelman, who has a son who was diagnosed with autism. I believe sharing information will make us better citizens, better parents and can build community.

By Guest: Lenore Koppelman

Ralphie eating a strawberry cupcakeI never dreamed that I would be the mother of a child with “special needs”. Growing up, when fantasizing about what it would be like to be a mommy myself, and to have children of my own, I always imagined that I would have very typical children. Don’t we all? So when my little boy began to show symptoms of autism, I was depressed for a few days. I was in a state in which I did not feel that life was particularly fair. But then I began to realize… rather quickly… that things were not all doom and gloom.

My kid is AWESOME! For every struggle he has because of his autism, he also has acquired a super-power from it. For example… he struggles making friends. But he began teaching himself how to read when he was only 14 months old! He struggles with potty training and is still in a diaper. But he memorized all of the countries in the world, and can tell you which continent that country belongs to, and what that country’s capital is! And he can find it on a globe in seconds flat! Literally ANY country! In the WORLD!

ralphie with map

I began to think of my son as one of the X-Men. Maybe all of the X-men have autism? They all are seen as misfits, who really struggle to fit in with “normal humans”. And many do not understand them, so they are oftentimes feared and misunderstood. But they also can do amazing things, and have incredible powers. My little boy isn’t defective. He’s a super hero. He is my hero. And his name is Ralph.

Here are a few things that I want the world to understand about Ralph, and about autism in general:

1.) Every child is different. Even ones with autism.

There is a popular saying in the autism community: “If you’ve met one person with autism… you have met ONE person with autism”. Meaning, no two people with autism are exactly alike. I can never claim to be an expert on all kids with autism. I can only claim to be an expert on RALPH. The reason why I want the world to understand this is because it truly drives me crazy when people say things to me like “My sister’s husband’s nephew’s best friend has autism. They don’t let him eat gluten. So you shouldn’t let Ralph eat gluten.” … “I once met somebody with autism at the hair salon a few years ago. She was really into reciting numbers, and was a total math whiz. I’ll bet Ralph is really good at math.” … or my personal favorite: “Have you ever thought about teaching him how to count cards? That would be awesome!”. (Yes. Yes. Somebody actually said that to me once).

Well here’s a newsflash, people: My son’s behavior is the same whether he eats gluten or not. We tried cutting it out, and then realized that nothing had changed in his behavior. So we welcomed it back in. Ralph actually struggles with math. It’s his least favorite subject. And lastly, no. No, my son is not Rain Man. I’m not taking him to Vegas to count cards for me. At least… not this young. Not gonna happen.

The point I am trying to make here is that no two people with autism are exactly alike. Sure, many of them share similar traits and struggles: It is common for many (but not all) people with autism to have sensory issues. It is common for many (but not all) people with autism to comfort themselves by rocking, or flapping their hands, or walking on their tippy toes, or any other number of things. These are called “stims”. It is common for many (but not all) people with autism to struggle socially. But despite these commonalities (and a few others), it does not change the fact that what works for one person with autism does not necessarily work for anybody else.

baby ralphie

2.) The way you discipline your kids is (and needs to be) different than the way I discipline mine.

So often I encounter people telling me how to discipline my son. They feel that it is somehow their own business to tell me how I should discipline him correctly. When my little guy is having one of his classic autism-induced meltdowns, sometimes people feel this urge to jump in and criticize me for not taking care of it in the exact same way that they would with their own (often neuro-typical) children. Or they tell me about the article they read that was linked to somebody’s Facebook wall the week before, about how kids with autism need X, Y, and Z. So I should do that, instead. (Again, if you don’t understand why that doesn’t make sense to advise, please refer back to lesson #1). So how do I decide how to discipline my child? Well… I’ll be honest. I’m still working on trying to figure that out. I haven’t yet found what will work. But I have already discovered what DOESN’T work:

Time outs for Ralph do not work. He LIKES the time out. He enjoys the solitude. The quiet. He sits in corners as a way to get away from the world and relax.

Yelling at Ralph doesn’t work. The entire world is too loud, to him. It always seems like everything and everyone is yelling. So he just stims and rocks to try to block it out.

Ralph’s therapy team and my husband and I are all working together to try to figure out a method of disciplining him that works best for Ralph, and best for us. They are the other individuals aside from my husband and I that have any say in how he should be disciplined. This rings true for any family with autism. So unless we approach you and ask for it directly, please keep your well-intended advice to yourself. Thank you.

lenore and ralphie 23.) Not all families of children with autism stand behind the same causes. (And that’s okay).

People automatically assume that if your child has autism, that you must be a huge advocate for Autism Speaks. They assume that you must have every book written by Jenny McCarthy, and you must be against vaccinating your kids. They automatically assume that all families of children battling autism must all be a member of the same team.  In reality, nothing could be farther from the truth.

Not everyone supports Autism Speaks or agrees with Jenny McCarthy for example, so please be careful when discussing different organizations and belief systems with people. The varying opinions are as diverse as different cultures and religions, and people can be equally as passionate in their opinions.

Whatever they believe or support, BOTH sides of this debate LOVE their kids. Both sides want what is best for their children.

 

4.) Autism is what is known as a “hidden disability”. Nobody can “LOOK autistic”. There is absolutely no way to look at somebody’s physical appearance, and to see their autism. Perhaps you might become suspicious by their various behaviors, if you happen to know what to look for. But as for their outwardly appearance, there is truly no way to tell. This does not mean that our child doesn’t struggle. It’s an internal struggle, and it happens every day.

While there are a few different ways of getting diagnosed,  one thing remains constant: if somebody tells you that their child has autism, … believe them. So often people look at my son and say things like “But he doesn’t LOOK autistic! He looks great!”, or “You wouldn’t know it by looking at him.” “He seems fine to me.” Maybe these comments were meant to be a compliment. But they aren’t. Here’s why: It implies that it’s a good thing your child doesn’t look like they have autism, because if they did, they might not look… “great”. Or even good, for that matter. They might look… unintelligent. Slow. Unfortunate.  To be perfectly honest, it’s what they call a back-handed compliment. It’s as if someone is actually saying “WOW! You really lucked out! You can’t even SEE the stupid!”. I know… I know… I know. That isn’t at ALL what they mean. But sometimes that can be how it comes across. So if a parent tells you “my child has autism”, try this approach instead: “Oh? I don’t actually know much about autism. Would you like to educate me about it?”… or “Oh! Okay. Thank you for sharing that with me. He/she looks beautiful and happy, and seems to be doing so well. You must be very proud!”; any of these responses or ones like it would be an enormous breath of fresh air to any parent of an autistic child.

ralphie and dad

And last, but certainly not least:

5.) IT TAKES A VILLAGE.

The number one thing that I feel like I need other parents to know… and my other friends with kids that also  have autism need the world to know… is that we NEED YOU. We need our friends. We need our family. We need our community. We need your support to get through this.
Unfortunately, it is not terribly uncommon for our family’s battle with autism to drive people away. Children with autism have a tendency to find it difficult to appropriately socialize. What typically happens is that our children have trouble looking your children in the eye. They have trouble understanding how to smile at them, and talk with them, and play with them.  Our children with autism may have a massive meltdown at the very idea of having to share a toy, or may start rocking in the corner and screaming because another child tried to give them a hug. The fact of the matter is that regardless of where they fall on the spectrum, autism can seem scary sometimes, and make people, especially younger neuro-typical children, uncomfortable. People begin to spend less time with us as a result.

The other factor might also be that we have less time for our friends in neuro-typical families. We get so busy juggling all of the therapy appointments that our kids now have. Play-dates can be hard for us to join in on when our child has speech, physical therapy, occupational therapy, music therapy, water therapy, feeding therapy, ABA therapy… you get the general idea.

You might also begin to feel like you have less in common with us. Especially in the beginning, right after we get our initial diagnosis. We are so caught up in tons of research on how to make our children’s lives better, that we deeply immerse ourselves in learning all about autism. You might be growing sick and tired of hearing us talk about it. I’m sure you would love for us to chat with you about the latest movie that just came out, or that really great book that is now on the national bestseller list. And yet here we go again… talking about our kid’s autism. I can only imagine that it grows rather tiring.

lenore and ralphieBut please try to put yourselves in our shoes, and think about how tired WE are. Being a part of a family that is struggling and even THRIVING with autism  can get really lonely sometimes. We start to notice that the moms we used to hang out with when our kids were all still just babies… before the hand flapping… before the rocking back and forth… before the constant scripting began… are still hanging out without us. And that isn’t a criminal act unto itself. It is absolutely allowed. Friendships frequently change and shift and grow apart between people, autism or not. That’s just how life is. But sometimes it IS a direct result. Maybe you are sick of hearing us talk about autism. Maybe our kids just freak your kids out, and you don’t want to force them into a situation where they are going to feel uncomfortable. All completely understandable. But many of my fellow “autism moms” and I have noticed that many of our friends we had before “The A WORD” came into our lives are only polite acquaintances now. Not because they are necessarily bad people or anything. But simply because of human nature.

The truth of the matter is… that YES. Things have changed. A LOT. But we miss you! We MISS going out for drinks with you. We MISS chatting with you about the latest neighborhood gossip, and how hot that actor was in that latest film that just came out last week. We MISS sitting in coffee shops with you, chatting over iced frappes while our kids all socialize together on the floor. And we don’t know how to get it back.

One of the kindest things you can do for a family feeling isolated by autism is to reach out. Offer to bring them some dinner. Invite them to your child’s birthday party, even if it makes your own child uncomfortable to have this other little boy or girl rocking and flapping in the corner there. Invite them to your big birthday bash at the local neighborhood beer garden, even if it makes you feel a little bit embarrassed that their child with autism will probably feel the need to arrive dressed up as Mike Wazowski from Monster’s Inc. And one of his parents might accompany him dressed up as Sulley.  Invite them to a movie… to the playground… to your house for some iced tea. Include us… at least sometimes. Help us to remember who we were before this diagnosis, and help us to remember that we are still people that exist apart from it.

Ralph is mike and steve is sully

Another really important think you can do is to not talk about autism as if it is something to be scared of. Never speak about it in hushed tones, as if it is the boogey man. Don’t try to hide my son’s autism from your children. Be honest and open with them about it. Educate them. Think that they are too young? I have had parents tell me that they don’t want their kids to know about Ralph’s autism because they are “too young to hear about something so heavy”. Autism doesn’t have to be heavy. Especially to you. You and your family don’t live with it. We do. Besides… those Disney movies you let your children watch are filled with heavy lessons, believe you me. Educating your children does not have to be a big scary daunting task.

My favorite tool for teaching kids about autism is by showing them an episode of the cartoon Arthur. In the episode “When Carl Met George” (#161, episode 6 of season 13) , George meets a new friend named Carl, who has Asperger’s Syndrome.  (Asperger’s is a form of autism. The same form that my son Ralph has). George is unsure about how to act around his new friend. Luckily, Brain helps put autism in perspective for him so he can understand some of Carl’s mannerisms. In the end, they become great friends! I absolutely love this episode of Arthur. I have watched it on YouTube, and asked my friends with neuro-typical children to show it to their own children to help them understand why Ralphie acts the way that he does. It seems to help a LOT.

So please, talk to your children, and help them to understand that children with autism may be different… but in the end, they really want exactly what your own children want: To be accepted. To have friends. To be loved. And to be happy. Isn’t that what we all want out of life? And we cannot achieve this in isolation. So please remember to reach out. Not only to the families dealing with autism, but to other people in your community regardless of what challenges they face.

I am a firm believer that WE ALL have “special needs”. Each and every one of us has needs that are special to us. And together, we can help each other as a community to achieve these goals. Together, we can make a difference. And in you reaching out, we aren’t the only ones who will benefit. You and your own family will benefit as well. Because you will have little Ralphie in your lives, and the magic and wonder that he possesses is bound to fill your life with joy. Trust me. I would know. I have the honor and the privilege of basking in its glow every single day.

 

Lenore Koppelman grew up in New Orleans, and now resides with her husband and son in Astoria, Queens. She is a professional face and body painter known as “The Cheeky Chipmunk”.

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autism 5 things I want you to know

Diana Limongi
welcome! I'm a Latina working mom from Astoria, NY, mom to a trilingual four-year old. I blog about motherhood, Latino issues, women's issues, work/life balance, food, parenting and raising my multilingual and multicultural son!

2 Comments

  1. Thank you Lenore for your insight on your experiences with Autism. I too have a child on the spectrum. She was diagnosed at 2 years old and immediately began early intervention. There are so many obstacles we must face on a day to day basis. My Khloë has definitely made tremendous progress (been potty trained for a year now…woohoo!), but with every triumph there is a new goal plan drafted. Reading this article is quite comforting in a sense because you touched on the loneliness we as parents tend to feel because our child’s therapy sessions, which are necessary and extremely helpful, but they also leave us with no time to spare for “casual” daily activities. BTW: I agree with you 1000% on our lil “superheros”…thank you for sharing Lenore. Peace to you and your family

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