When the Kid With Autism Is the Older Brother

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I knew this one was coming. But now that it’s here, I’m stumped.

My boys are 17 months apart — TJ, who has autism, is 15 years old to Peter’s 13. Up until recently they’ve been pretty close to each other in terms of their emotional ages.

Peter has always been aware of TJ’s autism and as a result, has typically taken the lead. He would decide what they would play and how they would play it, and TJ would usually follow with little to no complaints.

But things are changing. And it’s not just the hormones (theirs, not mine).

TJ’s fuse has been incredibly short lately. This is not unusual for the summertime, as his daily structure is kaput. He finds such comfort in his structure that when that structure is gone, he’s much more sensitive and raw and this close to a meltdown more often than not. These past few days, Peter hardly has to say anything to TJ for him to blow up. What’s new about this situation is TJ’s ability to verbalize his reason for the recent blowups: “Peter treats me like I’m the little brother. And I’m not.”

We knew this was coming. But now that it’s here, it’s not such an easy problem to solve.

Peter is used to being the leader. How do we remind him that TJ is, indeed, the older sibling when TJ requires so much more effort to accomplish the simple things Peter can do? Things like walking home from school alone, or talking to a cashier at a store, or even washing his face, require so much practice for TJ to be successful. It’s only natural that Peter feels like the older sibling.

But he’s not.

How do we honor TJ’s rightful place as the older sibling when things are so much more difficult for him?

This is one of those tough issues that takes so much focus and planning on our parts, as their parents. Usually when TJ stumbles, I’m right there with a quick solution so we can all continue on our way.

This one has no quick solution.

So I, as their mom, have to remember this is hard for both of them. TJ wants validation as the older brother, and Peter wants respect for his abilities and strengths as the neuro-typical kid in our house.  

Both positions matter. Both are big deals.

No quick fix exists. I’m dipping my toe into this new pond slowly and thoughtfully. I’m going to get messy and fall in and struggle because I’m not perfect. I’ve never tackled this one before.  

But I do know that even though I will make mistakes, I’ll take this baby step by baby step, with each boys’ hearts and feelings in mind. I’ll do the best that I can. And as long as we can all sit down together and talk things through clearly and slowly, we will find our way.

So off we go — with huge love in our hearts for the boys they’ve been and for the young men they’re turning into. We go forward.

And I know eventually, we’ll get through this one just fine.

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One Simple, Powerful Way to Support Caregivers

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In times of hardship or pain, looking at the people we love can be powerful medicine. Parents and caregivers need to be on the receiving end of the loving and supportive gaze of friends or family too.

Here’s what got me thinking about eye contact: I happened to notice a billboard with a photo of a beautiful but destitute young African woman holding a dangerously thin infant, who was clearly malnourished and distressed. I thought it was so odd that this young mother wasn’t looking at her baby – she was gazing at something in the distance.

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Suddenly, I recognized myself in that mother. Our son Nicholas has severe cerebral palsy. When he was young, he suffered from cyclical vomiting syndrome. Every attempt to spoon-feed my boy ended badly and eventually he received the diagnosis of “failure to thrive.” I felt deeply wounded by my inability to nourish my son. Surgeries and time eventually enabled our boy to overcome his gastro woes, but I recall looking away from him in those dark days as I pushed the spoon toward his tiny mouth. I still feel badly about that.

Eye contact is a powerful kind of hand-holding. Sick people need it, people in pain need it and so do caregivers. Eye contact says, “I am with you. You don’t need to experience this alone. What happens to you happens to me, too.”

When Nicholas was 12, his hip dislocated and the orthopedic surgeon recommended a major reconstructive procedure. Transfusions would be necessary due to blood loss – the surgery sounded invasive and frightening. Nick was listening, holding his breath, wide-eyed. I bent down in front of him and held his hand. I asked him to look at me and I said, “Nicholas, you and I are the same blood type, so I am going to give you my blood for this surgery. My blood will be filled with comfort, with healing and most of all with my love. I will be with you all the time in the hospital to make sure you are fine. I promise.”

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Later that day, my best friend arrived at my door. She already knew about the decision and, in our entrance hall, she held my hands and looked straight at me – not for long but enough to say clearly, “You can do this and I will help you.” She smiled and squeezed my hands.

Caregivers look at their chargers all the time…scanning for signs of decline, bed sores, fevers or for changes in breathing and function. We are expert observers. But we need friends and family to look at us too. I often say that we cannot do this caring and giving alone. We need companions in our loving work. One powerful way to be a friend of a caregiver to look her in the eye.

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A Letter to My Children About My Mental Illness

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To my children,

You may have wondered why I’m not quite like other moms. I get tired easily and haven’t always been there to play. I haven’t taken you to many places. I don’t know what else, but I apologize

When you were very young, I had a psychotic break. That’s when you lose touch with reality. I was thinking strange thoughts, seeing things and hearing voices of people I know weren’t there.

It seemed like it came out of the blue. I kept to myself and didn’t say anything. I was going to work, your father was at home, but no one seemed to notice. People at work asked if I was OK and why I was sad, but that was it.

It wasn’t until Aunt Kim called. You know she’s a nurse practitioner. She recognized I wasn’t making sense and told Dad I needed to see a special kind of doctor called a psychiatrist. He prescribed me medication.

I went to the hospital for a short time. Leila, I know you were worried when I was gone. I’m sorry for about that. I want you to understand so you won’t have to worry if I go to the hospital again.

I have a mental illness. You may be familiar with other words people use like “crazy,” but I’m not crazy. I need medication for my brain to work right. Now, I don’t have those strange thoughts or voices.

I thought I would answer questions as you asked them, but you didn’t ask much. Leila, one day you helped me make a poster for a National Alliance on Mental Illness class. You asked why I was making it and I told you. You just said, “I didn’t know that,” and went back to playing. That was years ago. I don’t know if you remember.

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Recently you made me a friendship bracelet that says DBSA (Depression Bipolar Support Alliance). I thought you might ask something when I asked for it, but you forgot what letters I asked for. I do love my DSBA bracelet.

Jonah, I know you’re well aware of my medication. I take you to the pharmacy sometimes. I don’t want you to worry that I’m physically ill. I recently tried to explain this to you, but I fumbled my words. You didn’t want to hear any more.

I want to say how proud I am of both of you. Leila, you are so smart, talented and pretty. Jonah, you are so athletic, funny and hard working. I always worried I wouldn’t give you enough, that somehow having a mentally ill parent would inhibit you. But you are the greatest kids.

If you have questions, please ask. I know you can imagine things worse than the truth. I want to be honest with you. I don’t want to keep my illness a secret from you.

Love,

Mom

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10 Little Things That Help a Lot When You’re a Special Needs Parent

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A few years have gone by now since my son Jacob’s diagnosis, and although the challenges are still there, I feel like we’re more adjusted to our new way of life. Things are crazy almost all of the time, but I can make plans now and sometimes keep them. I can function without feeling completely scattered. I can reflect back on some amazing things that have helped me get through these times. But, I can also remember some not-so-amazing things.

I hear from many parents whose children have recently received an autism diagnosis and I can absolutely relate to the stress, frustration and fear that comes with it. When friends and family ask how they can help, you become so emotionally overwhelmed you can’t form an answer, much less have the energy to ask for help. So, here are some ways people have helped me that have made huge difference to our family.

1. Instead of staring, ask.

Instead of staring during meltdowns, strange eye movements, hand flapping or when we speak in a funny voices, ask questions. I love to inform people about autism because I want people learn, accept and understand my baby. Don’t feel like there are any dumb questions, either. Asking questions translates to caring.

2. Bring the help to our home.

If you want to help with babysitting, sometimes it’s easier to babysit at our house. People have offered to babysit my son, but don’t realize he’ll be highly agitated in a new environment. But it’s hard to say, “Yes, but can you come babysit at my house?” If you want to babysit, sometimes offer babysitting at our house.

3. Bring the hang to our home, too. 

If you want to hang out, sometimes it’s easier to just come to our house. My best friend often grabs some snacks at the store and then comes over to hang out with me. She knows I can’t leave Jacob much and is so considerate to come here when I can’t go somewhere special. This really helps me to unwind and feel like I’ve had some friend time without having to leave my house.

4. Set up a playdate! 

Make plans between your typical child and our children with autism. This is an amazing way for us to teach our children social skills, and for our kids to feel loved and accepted by their peers. You can also use this as an opportunity to talk to your children about special needs. These are valuable lessons for all children. Don’t be scared your child will mess up or say something wrong. Trust me, as a parent of a child with autism, I’m quite used to awkward moments and tend to be extremely forgiving.

5. Be understanding when we cancel plans last minute. 

This is a biggie. Children with autism often have difficult meltdowns and anxieties in certain places. Many other things can arise at the last minute. Be aware: there are simply some places we won’t even try to bring our kids. For us that includes places by lakes or pools we aren’t swimming in. But, please don’t stop inviting us places. There will be one day we can actually get out and have fun. Trust me, it will mean the world to us.

6. Don’t pretend like they aren’t there. 

Make sure you say hello and goodbye to our children with autism, even if they don’t say it back. In church, there are a couple of women who make it a point to stop and look at Jacob in his eyes to tell him, “Hi.” It’s so unbelievably kind they show him such respect and kindness.

7. Ask questions about our son, but not if he’s gotten “better.” 

Please know answering the question, “Has he gotten better?” is a really tough thing to do. For many families, some things get much better, while a lot of other things start getting worse. Instead, ask how they’re doing or if they’ve learned any cool new things. But, don’t avoid asking how our child is for fear of an awkward conversation. Asking the right questions is a excellent way to show you care.

 8. Instead of research, send us love.  

Please don’t send us research studies or the latest heal-autism-quick advice. Chances are we’ve already read it. I’ve become a research expert and am always reading studies and looking for tools for our children. Instead, send us encouraging emails, prayers or feelings of concern. That really means the world to us. Recently I received a kind email simply telling me someone has been thinking of us, and it made my day. I know I can say the same for my husband. Autism sometimes makes you feel isolated from the outside world, so notes of encouragement remind us we are part of the world, too. People have also reached out to tell my daughter how important she is, and what a great job she’s doing as a big sister. This kind of support makes her feel special and happy.

 9. Cry with us…

This is for our family or close friends. There’s a time to encourage, but you’ll see it in our eyes when we just need a good cry. Don’t say, “It’s OK, don’t worry,” because often that makes me feel like I should suck it up. If you can see I need to let something out, just be there. Acknowledge it’s hard. Let us get it all out. Sometimes a good cry is just what the doctor ordered.

10. …and then help us laugh. 

On the flip side, when I call you panicking about my child rubbing poop all over the window, or when we had to chase him through the house because he refused to put his pants on while a repair man was there, don’t hesitate to be extra silly and help us laugh! This really is what has helped me the most. My best friend almost daily has to remind me of the humor in the situations I call her about. Sure, it’s super stressful and scary, but you either cry or learn to laugh. I love that I can call her and know she’s going to make me giggle about what I’ve gone through that day.

It may not be exactly the same for everyone, but these things sure help us out a lot. Please share if you know someone who may need it.

A version of this post originally appeared on Jacob’s Journey Through Autism.

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If You Know a Dad With a Sick Child, Please Do This for Him

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I’ve always wanted to write about the dads, but I could never find the right words, the proper tone or the emotion behind it. Perhaps because I was trying to be empathetic to them and put myself in their place, or at least my husband, Rick’s, place. But I never could because he’s Dad and I’m Mom, and it’s just too hard to switch spots and understand what each is going through.

Perhaps since our son, Sam, is done with treatment and I’m able to look back at the last four years, I can better understand the world of the dads whose children are diagnosed with cancer — dads who are as equally affected as moms.

One thing I remember so vividly is Rick holding Sam when they told us he had cancer. I remember my knees weakening and holding onto the counter and screaming. I turned to look at Rick and he had a steady stream of tears running down his face and simply asked, “What next? What do we have to do?” When I wasn’t functioning, he was. When I couldn’t make phone calls, he did. Most importantly, when I was with Sam, he was with our other son, Eli. It was a struggle for both of us because all we wanted was to be together, and we were often apart for days. Another amazing things about him: Even when things were really rough, he went to work. He went to work with a smile on his face and his head held high, all the while wanting to be home with his family to comfort Eli, be with Sam and support me.

We’re not the only ones who’ve faced this. Many families do, as it’s often the dad who continues to work while the mom is the caregiver.

If you’re reading this, and you know a dad with a sick child, buy him a coffee, quietly tell him how much you admire him and shake his hand. He deserves it.

They’re the ones who won’t complain, the ones who cry when nobody is around. They tell us everything will be OK, and we believe them. They quietly struggle with watching their family, the very thing they have help build, fall apart. Once the dust settles, they have the tools to rebuild.

They’re often forgotten in the chaos of childhood cancer. They are the forward motion when everything comes to a halt. Thank you to my incredible husband, Rick, and all the dads out there who sacrifice a hell of a lot more than most people see. Thank you.

A version of this post originally appeared on Chemo and Donuts.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. 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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To the Teachers Who See My Son’s Autism as His Strength

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“Can I help you find something?”

“Yes. I’m looking for an end of the year present for my son’s teachers.”

“Can you tell me a little about them?”

“Well, sure. I need something special. I know we all say that, but I really mean it.”

I pause for a moment.

“My son calls himself Hero Howie at school. But his special education teachers? Actually all of my kids’ teachers? They are heroes, too. His and mine.”

“I have just the thing.”

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Because you help my kid out of the car in the school-drop-off circle with a hello every morning.

Because you watch him in the cafeteria before school starts to make sure he starts his day off on the right foot.

Because you welcome him in to the school and know him by name.

Because you believe in him when no one else does.

Because you understand how a slight muscle movement or seat squirm or change-in-tone of voice means he’s overwhelmed and needs a break.

Because you modify the assignments to fit my kid. Not because he can’t do the work, but because you know when he’s reached his limit.

Because you read books and websites and attend seminars outside of school hours to understand my kid better.

Because you love to come to work every day knowing it’s about my kid and his successes.

Because it’s not just a job to you.

Because you see autism not as a limit, but as his strength, and you step out of the diagnosis box to see him as an individual.

Because you understand that the aggressions are not personal but part of the fight-or-flight overload of the day.

Because you wake up after those tough days ready to teach again.

Because you celebrate his successes and stay up at night figuring out how to help him the next day.

Because you believe in progress, not perfection.

Because you do cartwheels in the halls and make collages of every single picture you’ve taken of him.

Because you request to be my child’s aide and teacher next year.

Because you love him.

Because you taught him to believe in himself. And love himself.

To Mrs. M and Mrs. C and Mrs. S at the elementary school and Mrs. M at the preschool…

You. You are the heroes.

And for that, I am forever grateful.

This post originally appeared on Try Defying Gravity.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. 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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