To the Friends, Family and Classmates Who Don’t Invite My Child With Autism

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It’s a scenario I hear time and time again: our autistic kids getting left out from birthday parties.

Whether it be from classmates, friends or family. It stings.

Some of our kids may not care. They don’t like to be around a bunch of loud people. But asking is still the right thing to do. Don’t assume they, or we, won’t want to take part. Include us! Let us make that decision for ourselves.

If we decline, understand. It’s not you. We may be having a rough day. Our kids may need a break from sensory stimulation. We may have therapy engagements. There could be a million reason we can’t come, but you won’t know unless you invite us.

Recently, it happened to my son. He doesn’t know yet. I assure you when he does, he will be hurt. He’s sensitive. He constantly worries people don’t like him or think he’s weird.

I hid the pictures of this party from my Facebook timeline when I let him play a pool game on my account. He also has a generic account, that his father and I control, to play games. I logged into that and hid the pictures from that timeline too.

It’s just a matter of when his friend says something about the party. He will know. He will know he wasn’t asked. He will then ask us why.

How do we answer that?

Maybe it was an oversight? It happens. Or maybe it wasn’t. We’ll never know because I won’t ask. I don’t like confrontation like that.

All I know is, it hurt. When those pictures of his friend and the other kids having fun came through my feed, my heart sank.

It’s hard when your kid isn’t included. We know how amazing our children are. Sadly, others can’t see that. Judgment clouds their minds. They assume our children are bad or a problem or a handful.

Get to know them. I promise you won’t be disappointed.

You will see life from a perspective you never expected. You may even learn a few things. Like tolerance, acceptance and perseverance.

Our kids deserve that and more.

So please, from one mother to another, don’t forget us! We matter!

This post appeared as a guest blog on Kelly’s Thoughts on Things.

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12-Year-Old Cancer Patient Uses His 1 Wish to Feed Hospital Patients and Staff

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This boy is bringing new meaning to the words “comfort food.”

While Lucas Hobbs, 12, was undergoing treatment for stage III Hodgkin’s Lymphoma at the Children’s Hospital and Clinics of Minnesota, he missed good food.

The aspiring chef felt that the chemotherapy messed with his taste buds and his appetite, leaving him not wanting to eat some of his favorite food and losing weight, NBC News reported. And having to eat hospital food didn’t help either.

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Now, Lucas is in remission and he’s decided to use his Make-A-Wish to fill the bellies of the patients and staff that helped him get better. Lucas orchestrated several food trucks to dish out tasty treats with original names, like the “Blood Transfusion” and “Rockin’ Remission” snow cones. He made some visits to his local church and police department before parking the food trucks outside the hospital for staff and patients to enjoy.

I am here to give back the kindness that everybody gave me when I was sick,” Lucas told the NBC News. “I am here to return that kindness.”

Get more on the story from the video below: 

 

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50 Ways My Life Has Changed Since Having a Baby With Down Syndrome

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Our world changed when we received the prenatal diagnosis. We were scared and filled with worry and didn’t think we knew how to raise a child with special needs. We took the time to get educated, and we surrounded ourselves with a wonderful support system. Although we didn’t expect to be on this journey, we embrace it and are thankful for our beautiful children, who bring so much light and love to our lives.

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As I travel along this journey with my family, my life has changed in the following ways….

1. I need a calendar.
2. I plan my day around therapy and appointments.
3. I laugh a lot.
4. I cry a lot.
5. I worry a lot.
6. I think way too far into the future.
7. I savor milestones.
8. I cry when milestones are met.
9. I want to make the world a better place.
10. I look both ways multiple times when I cross the street.
11. I feel my heart fill with love when I look at my children.
12. I watch my children sleeping and I listen to their breathing.
13. I avoid play places during cold and flu season.
14. I don’t take life for granted.
15. I snuggle my children too hard sometimes.
16. I think about the challenges my daughter will have to overcome.
17. I think about all of the good people in the world.
18. I think about all of the haters in the world.
19. I worry about the first day of school for both girls.
20. I get mad that my daughter has Down syndrome.
21. I love Down syndrome.

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22. I see the love between two sisters.
23. I go to bed too early.
24. I want my children to see the world.
25. I want my girls to take care of each other but live their own lives.
26. I love the attention my daughter gets when we go out as a family.
27. I get bothered when people stare.
28. I want to put my children in a bubble.
29. I’m a helicopter parent.
30. I detest the word “retard,” and if you use it, I will call you out.
31. I savor quiet moments.
32. I love when the girls scream in excitement.
33. I love my new friends who have my back.
34. I love my childhood friends who love me no matter what.
35. I think about if my daughter with special needs will find a partner and if she will get married.
36. Since giving birth, I can’t jump on a trampoline because I pee my pants.
37. I spoil my children.
38. I love that my daughter only sees her sister and not Down syndrome.
39. I love when the girls wrestle and play dolls together.
40. I never expected my life to be filled with so much love and gratitude.
41. I want to run up to families who have a child with Down syndrome and tell them that we are on the same team.
42. I cry watching commercials.
43. I admire bands and celebrities who take their time to appreciate our children.
44. I find it really hard that the girls are so close in age.
45. I love that the girls are so close in age and that they enjoy the same things.
46. I am tired.
47. I want my daughter to know that she has filled my heart with love since the very beginning.
48. I love that the world is making shifts — inclusion, acceptance and seeing the ability.
49. I’ve learned that beauty comes in all shapes, sizes, colors, religions and abilities.
50. When I was growing up, I knew I wanted to get married and I knew I wanted a family. I never expected my life to take the turn that it did. An unexpected diagnosis. An unexpected journey. We hope and pray for healthy children and a journey that doesn’t involve trials and tribulations. We hope for the easy road, one filled with flowers and beauty. We have visions of the perfect family, the white picket fence. We don’t think about how life may take us down another path, one we never expected or hoped for.

The journey we were presented with was at first too much, too scary, filled with uncertainty, fears and worry. We soon came to realize this was the plan, this was our journey, our own personal story we get to share with others. We soon came to realize that as a family, we will climb this mountain, we will take in all the amazing and beautiful moments. We’ve been blessed with two healthy and beautiful girls. We’ve been given a life filled with so much love, light, joy and happiness. Our plan took a slight curve, but let me tell you, I wouldn’t change the journey, I wouldn’t want my life to be any different, I wouldn’t want the path with no bumps, no hills, no stumbling blocks. This is our life, our family, our story.

Follow this journey on A Perfect Extra Chromosome.

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How We Gently Pushed Our Son With Asperger’s Out of His Comfort Zone

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My 19-year-old son, Noah, was diagnosed with Asperger’s syndrome when he was 3, and I’ve felt uncertain about how much to push him out of his comfort zone ever since.

Years ago, when the other 5-year-old kids in the neighborhood were riding bikes, our son was content with reading books and playing Pokemon. When Noah was sitting on his bike, he would grab onto my husband or me, clench his jaw and tell us he was done 30 seconds after getting on.

I understood how impossible bike riding seemed to Noah. What was fun for other kids was not fun for him. But as Noah got older, I was concerned that he’d lose opportunities to play with friends if he didn’t learn how to ride. And so during the spring before middle school began, we tried one more time.

Finally, he could see the benefit of learning to ride. He’d be able to get away from his annoying parents more easily. He could be with his friends. He could have more freedom and independence. At the same time, we understood the immense obstacles that stood in his way. He didn’t feel comfortable or stable when both of his feet weren’t on the ground. He had to think through each movement before doing it and would look down at his feet when he started to pedal. It was hard for him to pay attention to his environment; he might encounter potholes, stop signs and car doors in his path.

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So we came up with a plan. We made a list of all the small steps Noah would need to take in order to ride his bike independently. We took away the pressure of having to learn by a certain date or age. We let him know he could set the pace and duration of training; he might work on one step for four weeks and another for four days. And we celebrated each new success no matter how small it might seem to others. After four months of practicing for up to 10 minutes each day, Noah got on his bike and rode down the hill from our house and I literally jumped for joy.

I have tremendous respect for the amount of effort my son has to expend every day to make sense of the world. Sometimes he’s exhausted and just wants to do what makes him feel calm and safe — being with good friends, playing with the dog, reading and playing video games. When he’s had enough time to do activities of his choosing, he’s more able to be flexible because he doesn’t feel as if he’s on high alert. And that’s when we can encourage him to try new things.

What we consider before gently pushing our son out of his comfort zone:

1. Is this something he wants to do?

If he’s motivated and interested, we can push a bit more. If he’s completely uninterested, we have to find a reason that resonates with him.

2. Is this something he needs to do?

He didn’t need to learn to ride a bike when he was 5. But by middle school, it became more important.

3. Does he have an underdeveloped skill that would help him reach a personal goal?

Noah wants to write a book but feels stuck. We talk about how people structure unstructured time and break down large goals into manageable pieces. We don’t tell him what to do but discuss what he thinks might be worth trying.

4. Is he fragile?

We don’t push when Noah has already hit his limit. We try to help him remember how to lower his stress and anxiety and connect him to the support and structure that works for him.

It helps me to remember that my son is on his own timetable. Comparing him to his peers leads me to push him for the wrong reasons. I can accept him for who he is and support him to try new things.

As I wrote in Parenting without Panic, “We need to provide just enough of a challenge to stretch our child’s abilities in a safe environment. Too much challenge and our children feel they are failures. Too little and they assume we don’t believe they are capable of much.”

Follow this journey on Brenda Dater’s website.

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When a Little Boy at Macy’s Asked About My Feeding Tube

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I had been struggling with severe anorexia nervosa for months, going in and out of hospitals on medical floors and psych floors. When I went out in public the condition of my body was shocking to people. I felt ostracized, ugly and different anywhere I went.

This was a good week. I was out of the hospital and thanks to a nasogastric feeding tube, had enough energy to get out of bed and walk around a bit. It was wonderful to get outside and away from the repetitive thoughts of my eating disorder, even for a few minutes. But it didn’t last for long. The stares snapped me back into reality and I heard whispers I knew were about me. As I walked into a craft store, a mom loudly commented to her son about how “gross” I looked. She didn’t even lower her voice to whisper.

I realized my disorder made other people so uncomfortable, they forgot I was actually a person like them. I was a person with feelings and eyes and ears. A person who eight years later can still remember this moment perfectly and how it made me feel like I deserved to be belittled because of my mental illness. I heard the comments, saw the stares and lowered my head a bit further as I moved on with my day. I pulled my hood over my face in the 80 degree weather so that I would feel a little less like a public spectacle or remnant of a circus freak show.

At Macy’s I shopped in the kids’ section because that was what fit me. I was by the fitting rooms where a mom and her son were shopping. He must have been 3 years old. He looked up at me and with a great curiosity said, “Hi, I’m Riley.” I smiled. “Why do you have a tube in your nose?” he asked. I smiled again. In this interaction with a toddler I didn’t feel judgment; I felt connection. I was a person, he was a person and he had a simple question for me. He asked politely. He looked me in the eyes. He asked my name.

I wasn’t exactly sure how to answer. No one had asked me that before. 

The boy’s mom jumped in and told him that some people just need help eating. He nodded, seemed satisfied with her answer and showed me a t-shirt he was getting. I looked up and simply said, “Thank you,” before we went our separate ways.

Why was a young child one of the few people who treated me like a person? At what stage in life does curiosity and acceptance turn into judgment? What this world needs is less judgment and more Rileys.

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This Dad Created a Superhero to Explain His Epilepsy to Kids

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John McLaren remembers falling to the floor and hearing his son shout, “Daddy fell down, Daddy fell down.” The 43-year-old from Durham, North Carolina has epilepsy — he was diagnosed at 14 and has experienced seizures into adulthood.

After this seizure, McLaren realized his son David, then 2 years old, knew nothing about his condition.

“I was afraid I would pass away early and leave my son without a dad,” McLaren told The Mighty. “I wanted him to have something to remember me by.”

So he created a comic book to explain epilepsy through a superhero named ToteMan.

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McLaren modeled ToteMan after himself, explaining epilepsy and seizure in terms kids can understand. He wanted his kids to know what to do if he hit the ground again.

“How do I explain this to a kid? It’s hard enough to explain this to an adult, much less a child,” McLaren told The Mighty.

The answer? Through fun illustrations. The comic details ToteMan assisting a child who’s just had a seizure, demonstrating what to do if you’re in a similar situation.

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The name “ToteMan” comes from a job McLaren had in his 20s. He worked at a racetrack in New Jersey where he’d fix the totalisator (tote) boards and betting machines. If the tellers needed assistance, they’d yell for a “toteman.” McLaren explained that the totemen would rescue the teller; they were the superheroes at the track.

ToteMan’s number one accessory, a screwdriver, pays homage to McLaren’s career. He’s repaired things his entire life. He started out fixing machines like copiers and now works in IT fixing technology.

“Thor has a hammer,” McLaren said. “ToteMan has a screwdriver.”

McLaren goes to ComicCon, a convention for comics and other related art, with David and gives out free copies of “ToteMan.” He’s worked with the Epilepsy Foundation of America to give out comic books through its events. He doesn’t want to charge anyone for the comic. One day, McLaren hopes “ToteMan” makes it into hospitals and schools. Until then, he’s just happy he’s made a lasting memory for his kids.

You can download the comic for free here. The book is now available in Spanish too.

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