When a Parent of a Child Just Diagnosed With Autism Asked Me What to Do

104
104
0

As someone on the autism spectrum, I’m always trying to advocate for myself. I love to help others when I can and share information and knowledge of what my life is like. My hope is that people can learn from what I’ve been through and apply it to what may help someone else on the spectrum.

Sometimes, I think I’m pretty much set with understanding autism. But I’m constantly reminded this is far from the truth. I only understand my own autism.

I was reminded of this when a parent of a child who was recently diagnosed asked what they should do. I was about to answer the question, but I didn’t quite know how to answer it right away. I sat there for a second and thought about it. If I had a child who was recently diagnosed as being on the autism spectrum, what would I do first? I didn’t know what I would do. Suddenly, I began to understand.

All of this time, I wondered why some parents became so upset with the diagnosis of their child. What is so upsetting about it? Their child hasn’t changed. Don’t they love their child the way they are?

But when I was faced with the same idea and having to answer that question, I finally understood. I began to feel so overwhelmed. There was just so much information and no way to know what was right for that specific child. Who should they ask? What question should they ask first?

I came to a very simple conclusion. If your child has just received an autism spectrum diagnosis, the first thing you probably need to do is just take it in. Just sit. Breathe. Don’t let all of the negative thoughts in your head. Understand that things are going to be different from what you thought they would be like. Then sit and breathe again. Remember that it’s OK to take things slowly and ask for help.

Remember that you don’t have to face things alone.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental 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. Check out our Submit a Story page for more about our submission guidelines.

104
104
0

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When a Stranger Asked Me 'Is Your Other Kid Normal?'

589
589
3

“Is your other kid normal?”

How would you feel if someone asked you that?

Before I let you know how I reacted though, I want to start by looking at the dictionary definition of “normal.”

According to The Oxford English Dictionary, the word “normal” means: conforming to a standard; usual, typical or expected.

In other words, this stranger was implying my son is not standard, usual or what was expected. He does not fit society’s stereotypical idea of a 7-year-old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love how he is different. I love that he does things in his own way, at his own time and that he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yogurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all “normal” things that 7-year-old boys do!

He has brown hair, hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my son and saw his differences. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child. Maybe I should be sad I have to support him so much at 7? Maybe I should be brokenhearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well, a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

But now, I see my son differently. I see him as beautiful. I see him as wonderful.
He is normal. His sister is normal, too.

Normal according to the dictionary is conforming to a standard. If you see the standard as “being human,” then there really is no such thing as not being normal. So do you want to know how I replied?

I simply smiled and said softly, “Yes. I am blessed with two amazing children. Thanks!”

Miriam's children. Her son makes a goofy face.
Miriam’s children

Follow this journey on Faithmummy.

 The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? 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 Submit a Story page for more about our submission guidelines.

589
589
3
TOPICS
JOIN THE CONVERSATION

Why I’ll Never Say Our Version of Hard Is Worse Than Yours

348
348
0

One thing that shocked me the most upon becoming a part of the autism community was the great divide and the tension that exists. You don’t have to go any further than the comments section on an autism blog to find the division and anger. I see the derisiveness in our support groups, in our special education classes and in our Internet discussions.

I see support groups separating into functioning levels, as parents with kids on opposite sides of the spectrum aren’t always able to relate to one another. Amongst parents with children on one end of the spectrum, there can be a constant one-upping. This constant bickering over whose worst days are worse; over which child has the most challenges. Are people really arguing about this or feeling slighted if their child isn’t “severe enough” to be considered on this end of the spectrum?

Well, in fact, we are. Maybe I should give you some context. How many times have you heard or read:

“At least your child talks.”

“Oh, he’s mainstreamed some of the day? So he’s just quirky, right?”

“If you don’t deal with aggression on a daily basis, you don’t know the autism I know.”

Sound more familiar now? There is nothing wrong with acknowledging that autism is a broad spectrum, and it affects everyone differently. But when we start belittling others’ struggles and day to day challenges, we start hurting our entire community.

I was reading comments on one of my published pieces the other day. One reader said something like, “The person who wrote this clearly has a high-functioning child. They don’t deal with self-harming or aggression or destruction.”

Except we do deal with self-harming and aggression. Every day. We do have our house torn apart and things broken mid-meltdown. The first thing I thought: How dare this person presume to know what we go through day-to-day based on one article, based on one day, one snapshot of our lives.

My second thought: Damn, I think I have said something like that before.

I remember a couple years ago arguing with a self-advocate and saying something to the effect of, “Well, if you are sitting there typing your thoughts, you have no idea what severe autism is like. Your opinions don’t apply to me and what my kid goes through.”

How dare I presume to know what someone else’s autism is like. That autistic adult could easily be my son in 20 years, possibly able to type his thoughts, but also having gone through years of therapy to get to that point. They could easily be someone who can type their thoughts but still can’t speak or someone who still struggles with so much anxiety they cannot leave their house.

I’m sure at some point we have all been on our side of this divide, and we cringe when the other side tells us we don’t have a right to feel the way we feel. When people unfollow my page because they see a video of my son talking and they assumed he was nonverbal like their child, it hurts. Especially as I go through his re-evaluation results this week and see that my beautiful 5-year-old got “poor” or “very poor” marks in almost every category. Don’t presume to know another family’s struggle.

When my friend tells me her son has attempted suicide again because he is so very aware of his differences and isolation, my heart breaks. And it breaks even more knowing that before I knew her, I judged that side of our divide. I thought “Are they really complaining their gifted child isn’t challenged enough in school and is having behavior issues? I would love to have that problem.”

My child may never live on his own, but maybe he will find his version of happy, and that will be enough. Your son may never say the words, “I love you,” but maybe his smile and his hugs are enough. My son may never stop having explosive moments, but maybe he will learn to get through them without hurting himself or his family. Your daughter may never have a lot of friends, but maybe she will find great satisfaction in what she does for a living.

There are going to be hard days, and although our hard may look different than yours, I will never discount your feelings or experiences because they are different than my own. We’re all in this together, and I believe if we spent a little more time building each other up rather than ripping the other down, our community could move mountains.

boys walking on grass
Mandy’s sons.

Follow this journey on From the Bowels of Motherhood.

The Mighty is asking the following: Write a love letter to another person with your disability, disease or mental 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. Check out our Submit a Story page for more about our submission guidelines.

348
348
0
TOPICS
JOIN THE CONVERSATION

3 Tips for Learning To Adapt When You Have Autism

0

Hey Andrew Levin here, with a video about learning to adapt when you have autism. I believe this is an important aspect of life and as such, it should be something that everyone does.

If you have an idea for a video you’d like made, send me a message at [email protected].

0
TOPICS
, , Video
JOIN THE CONVERSATION

When I Stopped Trying to Be Something My Brain Wasn't Wired to Be

627
627
1

Labels are words we use to describe ourselves, a thing or someone else. Some people think labels put you in a box and limit what you believe you can do. They can. Some labels hurt your feelings. They do.

In scouting upcoming opponents in basketball, I use labels a lot: left-handed, shooter, driver, quick, smart, athletic, physical, strong. For me and the players (hopefully) they are helpful. The labels help the players understand tendencies and what the opposition is most likely to do. As for the labeled, in this case, they have some control over their labels. Your freshman year, you could be solely a spot up shooter, but you could improve your skill set over the summer to become a more complete player to rid yourself of the label “shooter.” Then, I have to add more labels after your name: improved, quicker, stronger. In basketball, best I can tell, labels are neither good nor bad. They are simply the truth.

When I was growing up, people used labels to describe me as well: smart, tomboy, left-handed, nerd. I can see how people say labels put you in a box. People told me I was smart, so I was. They called me a tomboy, so I was. But I always had been left-handed.

Some labels are hurtful: stupid, slow, dumb, the R-word (which I hate).

I don’t know which comes first. If I was the thing or if people called me the thing. If you are the thing or if people call you the thing.

This I know: Labels shouldn’t be used to demean another human being. You should never use a word that makes or is meant to make a person feel less than human. If that’s what you are using labels for and that’s what you are limiting labels to, then they’re bad. No contest.

But what about the good ones? What about the ones that encourage you, that empower you, that give you greater self-belief and confidence?  What about the labels that promote self-discovery, peace and learning?

For me, that’s what the labels of ASD, obsessive compulsive disorder and ADHD did. They gave me a “why.” Growing up, I didn’t know why I did certain things things. I didn’t know that not everyone’s brains carried on a never-ending conversation I hoped never spilled over outside my head. I didn’t know my head wasn’t like most people’s. These diagnostic labels taught me so much about myself.

They helped me learn about other people who had the same difficulties and how they coped. These labels gave me an inner peace I hadn’t felt before. Knowing what was “wrong”/different helped me learn about my strengths and weaknesses. One of my favorite sayings, which I learned from one of my favorite people (Coach Jenny): “Know your strengths and stay in your lane.” These diagnostic labels helped me learn more about the areas I tend to struggle with and the areas in which I excel. What a difference that made! Learning I would likely struggle with the recruiting area of college athletics allowed me to change my career path to stay in areas where I excel, video and stats.

Recently, I was asked how I expected to get a job since I struggled making eye contact. Before these labels, I would have answered I didn’t think I could find a job. Now: I know I can. I know that my abilities, my past experiences and the people for whom I have worked speak much louder than lack of eye contact. And if someone thinks that eye contact is more important, then I probably don’t want to work for them anyway!

I stopped trying to make myself be something my brain isn’t wired to be. I learned my brain was wired differently; not necessarily wrong, just different. The hopeless feelings went away and I became hopeful. Instead of focusing on all the things I couldn’t do, I started focusing on what I was good at and what made me feel good. I started selling my work instead of selling myself. I became more confident in my abilities.

You get to pick how you use labels. You can make them limiting, demeaning or hurtful. You can simply use them to state facts. You can use them to lift up, to empower and to encourage. You can take a label that was meant to be limiting and make it empowering. You can take a label that was meant to be hateful and ignore it; the user is likely ignorant of his/her own ignorance. Take a word that was meant to ruin your life and instead let it empower your life. You can turn a diagnosis into peace, education and acceptance.

Follow this journey on Erinmmckinney.
The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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 Submit a Story page for more about our submission guidelines.
627
627
1
TOPICS
, ,
JOIN THE CONVERSATION

10 Things You Can Do for a Parent Whose Child Just Got an Autism Diagnosis

4k
4k
0

Recently we celebrated the birthday of my youngest son Zach, who has autism. Families and friends from both sides of his genetic tree came to usher in his last year in single digits, while his almost teenaged older brother with severe autism, Justin, looked on.

All in all, the event went well, with my littlest love thrilled with his gifts and sad all the hoopla and his four parties were over.

Yes, I said four parties.

I often get reflective after these birthday parties for my sons, am prone to remembering years when things hadn’t gone so well. There was the year we tried to keep Justin on the computer when Zach was opening his presents, which failed miserably, resulting in meltdowns for both. At another party, my husband and I ended up having to carry Justin up to his room for some action I’ve totally forgotten, whisking him past a dozen or more suddenly hushed adults.

Things have not always remained constant at our parties, but one thing has remained consistent with both our families and friends since Justin’s diagnosis12 years ago, something for which I will always be eternally grateful.

No judgment.

There are many other things which, looking back, I am eternally grateful for, and if you’re reading this and are a family member or a friend of a parent whose child has just received an autism diagnosis, I hope you take a minute and peruse. My husband and I were very fortunate with the way the people in our lives reacted.

1. Don’t judge.

You may not understand why your friend/family member is handling her child’s meltdown/insomnia/refusal to eat/need to line everything up in the way she is. Trust me, she knows better than anyone what to do, and she knows her child best. Only offer suggestions if she asks for them.

2. Offer to help, and mean it.

She may be so overwhelmed she might not even know where to start asking for help. Give her time. She may need you to go on a doctor’s visit with her, or watch her child while she takes siblings to another appointment. She may just need to get out of her house for a few hours and take a break. Whatever she needs, try to be there for her, and
be there multiple times.

3. Initially, don’t send her research.

Trust me, she will be logging in a few million hours on the Internet. Hold onto whatever you find until things have calmed down a bit and you feel she can be receptive to your help.

4. Never compare her child to your second cousin’s neighbor’s high school sweetheart’s child with autism.

Autism comes in many shapes and sizes. Just because somebody’s child talked at 7 does not mean your friend’s child will. Comparisons are odious.

5. Don’t tell her he/she will grow out of it.

Autism is a lifelong neurological disorder. There are challenges and differences across the spectrum. Respect that.

6. Make them a meal.

Take the time to bring them dinner if you live nearby. Random acts of kindness cheered up my family immensely in the months following our sons’ diagnoses. They were bright spots in our day when facing meltdowns, sleeplessness, and mounds of paperwork for early intervention and school placements. Make the effort.

7. If you know of anyone with a child with autism who might be a positive support for your friend, hook her up.

The key word here is “positive.” She may need someone to vent to, who may even have suggestions and referrals to services and people who can make her life easier.

8. If the family needs money and you can help, offer it.

Insurance reform has helped immeasurably in covering autism therapies, but there may be a lag time before they kick in. Offer to fill in the gap if you can.

9. Just listen.

Don’t share with your friend that your neurotypical child had sleeping/eating/behavioral issues, too. You have no idea how long your friend/family member might be dealing with these challenges. Just be there as a sounding board.

10. Get both parents out.

Find a way for them to enjoy a peaceful dinner or a movie once a month. It can help both them as individuals and their marriage immensely. They may protest at first, but they likely need it whether they know it or not.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

4k
4k
0
TOPICS
, Contributor list
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.