The Time My Son Made Me Smile After a Tough IEP Day

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Yesterday was IEP day. It always causes me anxiety and stress.

In the days leading up to it, I try to mentally prepare myself for it. I have to admit, I can’t say I have really ever had a bad experience. For that, I am grateful. I really do feel that his team has always had his best interests at heart.

It is just the whole process that puts me on edge. It makes me feel… anxious, uneasy and uncomfortable. I have always attended the meetings alone. Unless of course you count last year. Jordan, my 6-year-old at the time, had to come with me. I jokingly called her my “Little Enforcer.”

Yesterday’s meeting went well. He got the services I believe he needs.

The part that gets me is hearing about where he struggles. It is not something I talk about here often. He does struggle, in so many areas. It is hard to listen to. I know it is coming, but it never makes it easier to hear. Of course I hear the good things, too, but it is the struggles that stay in the front of my mind. I left and felt, for lack of a better word, “blah” all day. I spent most of it in a sort of fog.

Then he got home from school. He got off the bus and flashed his handsome little grin at me. “Hi Mommy! You know, it is raining out!” He proceeded to walk to the car giggling, and trying to catch the raindrops on his tongue. I just watched him and smiled.

We got home from the bus stop. “Mommy, will you come watch ‘Angry Birds Tunes’ with me?” Of course I did. And he laughed, his most contagious belly laugh. How could a person not feel better after hearing their child snort from laughing so much?

Yep… some things are more difficult for him, and they may always be. I don’t know what the future holds and I try not to think ahead too much. But he works so hard. He has made such progress over the last few years.

I have to remind myself of that on days like yesterday. There will always be hiccups, but he is healthy and happy. I really can’t ask for more than that.

This post originally appeared on This Ausome Family.

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To the Women at Target Who Make My Daughter Happy

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In our town, there are at least three Target stores. I’ve been going to one of them since it first opened about 15 years ago. When my daughter, “Princess,” was an infant, I used to push our jogging stroller there several times a week just to get out of the house and get a little exercise. Princess even learned what the sale sticker looked like and schooled her grandma on it when she was around 4 years old. I’ll be the first to admit that there are some days that I go there more than once a day.

The great thing about our particular Target is that there are cashiers and stock people who know my outgoing child by name. Our favorite cashier is Susan. Susan always has a warm smile and a hug waiting for Princess. If Princess is not with me, she will ask how she is. She knows that Princess has her struggles, but she loves her just the same.

Another long time employee is Mimi. This lovely gal is a little person. Princess connected with her right away. It was as if she knew something was different about Mimi but she just treated her like everyone else. I think Mimi knew that Princess had her own challenges long before I shared them with her.

When Princess had her first hospitalization for behavioral health concerns back in 2012, Mimi somehow felt in her gut that something was amiss because I kept going to the store without my shopping buddy. I shared with Mimi a little of what was going on in our world. This precious lady went out of her way to bring a  Cinderella slipper necklace from her home for Princess. She kept it in her pocket until she saw us one day. Then she presented it to my daughter. She told her that when she saw this necklace, it made her think of Princess. Out of all of the people she knows, she thought of my daughter.She took the time to make her feel special.

There are other wonderful employees who work there as well. Amanda is one of the managers. She always pitches in wherever she sees a need. She keeps her employees happy and focused. There’s another employee who has the same name as my daughter. (Her real one) She’s friendly and professional.

On a recent outing to Target, Princess was distracted. I thought my child was right next to me, but she had wandered off to look at something else. I saw where she was, but she didn’t see me. After realizing she’d lost sight of me, she headed over to customer service. The employees there were just about to call me when I showed up. It was a relief to hear the young ladies behind the counter say that they recognized my daughter and knew she belonged with me.

I know that not every single Target is like mine, but I’m glad to know we have the best one right around the corner from us. Its customer service shines more than any I’ve ever been in, but I may just be a little biased.

A longer version of this post originally appeared on Raising A Drama Queen.

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The Friendship That Made Me Say ‘Thank You’ to Cancer

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When I was in high school, I was befriended by this loud outspoken, tall, beautiful girl who happened to have a black belt in karate. She taught me karate, showed me what it means to be a good friend, and gave me the beautiful gift of friendship.

Fast forward a few years, and Sam and I had stuck together for the most part. She had gorgeous twins girls at 19, which was a bit of a scandal at our church, but she took it all in stride. I found myself in a similar situation at 20. Pregnant, scared, hating myself. But did Sam judge me? No. Did she yell at me? Maybe a little. But mostly, she loved me. I don’t know what I would’ve done without my beautiful, fearless friend. She was the photographer at my wedding, my best supporter.

When her girls were about 1, Sam started having awful back pain. She went to the ER a few times, but was just given pain pills and sent away. She had no health insurance. When her girls were a few years older, she met an amazing man and was married in January of 2006. Shortly after she married, she had a beautiful baby boy. The entire time, from onset of pain to her son’s first birthday, Sam suffered. Her condition got so bad during pregnancy that doctors finally took notice. By now she had military coverage since her hubby was a naval submariner. He was gone six months of the year in three-month chunks.

During one of those away times, Sam’s doctors decided it was finally time for some more conclusive testing. She had no help, so I packed myself and my 2-year-old and 6-month-old and went to help her for 10 days. During that time, I cared for my sick friend, laughed, cried, watched way too many episodes of Scrubs, and got the gift of being there for my friend. We had some amazing moments, some scary sad moments. But those will be there forever and for this, I guess I have to say thank you to cancer.

That was the name of the culprit, the nasty awful thing that eventually stole my beautiful friend’s life. CANCER. Sarcoma, actually. A week after I went home, Sam called me. She was in tears. The results were in, and her doctor asked her where her husband was and said it was time to bring him home. She wanted to wait to tell Sam when Josh was there. But in true Sam fashion, she demanded answers. She wanted to know, so she could make a plan and be there for Josh when she had to break the news. Selfless, always thinking of others, that was Sam.

CANCER. A mass the size of a peach on her spine… more tests. Josh was flown home immediately. A few days after that, the doctors scanned Sam’s body to figure out the size of the tumor. Well, what they thought was a mass on her lower spine turned out to be EVERYWHERE. In Sam’s words, “My entire pelvis and some of my lungs and other parts lit up like a frigging Christmas tree!” I sat down for that one.

I asked her what the plan was. There was always a plan. This was Sam! Fearless and flawless and beautiful. Surely she would beat this! And she tried, oh how she tried. She fought with all her might.

Her doctor said (after a couple rounds of chemo and radiation) to go home and get her affairs in order because there was nothing they could do for her, that she had maybe 6 months. She looked at them and said, “F&%$ you! I’ll go out on MY OWN terms!” She bought herself another year or so of good quality life with sheer will and a special diet she read about.

In March of 2009, my sweet friend, my beautiful, amazing, warrior, passed away. We stayed in touch over all those months. I never got to see her again in person. She never met my youngest son, although she demanded I call her when he was born, even if it was 2 a.m. I’m thankful he was born at 11 a.m. instead. Sam and Josh bought a home, she painted it and remodeled it. She ripped bushes out at 7 a.m. and called to tell me about it. She lived her life fully and fearlessly until she just had no energy left.

So I guess I wrote all this to say, cancer taught me a lot. It taught me to cherish moments, cherish life. Cancer taught me that even though it crushes someone’s body, it can’t crush their spirit, not truly. Because I know Sam and I believe that she’s in Heaven right now, singing and dancing like a loon  and probably helping Jesus pick new paint for his walls. So thanks, cancer, for teaching me to slow down and also for letting me know you can’t ever truly win. Love conquers all.

Sam lives forever in my heart and I’m the mother and friend I am today because of her example. So thank you to Cancer, and to Sam, I love you sweet one. See you when I get there.

A longer version of this post originally appeared on Me, You, Wine, Cheesecake, and Autism.

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Their Relationship Isn’t What I Planned, and That’s OK

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As I lay in bed next to our 4-year-old, I feel myself wanting to hug him tighter and apologize. Some nights I look at his innocent face and tears well up in my eyes. This was not what we had planned for him.

The beauty is… he has no idea of the plans I made. He doesn’t know that I envisioned him helping his little brother ride his old trike around the block on a warm sunny day. He has no idea that I had scrapbook paper for the classic photos of shared baths in a tub full of bubbles. He doesn’t have a clue that I could hear their squeals of laughter and loud footsteps as they chased each other around the house. He doesn’t realize that I had their sibling relationship mapped out in my head before he even knew he was going to be a big brother.

Plans change. He helps his baby brother grab toys and stands next to him when he’s working hard in his stander. He’s part of the cheering squad during therapy. Throughout bath time, he sits next to the tub with me to help “make him happy.” He can light up his baby brother’s face by kissing his neck and playing peek-a-boo with his beloved monkey.

When his baby brother is crying and I’m whispering, “It’s okay, mommy’s here,” he looks into his eyes and says, “I’m here, baby brother, I’m here.”

He loves his baby brother so very much, and he doesn’t know about the plans I made. He will never know, and to be honest, I don’t think he cares. He loves his brother for who he is, not for who he isn’t.

He loves him for what he does, not for what he doesn’t do. He thinks his brother is special, but not for the reasons others know he’s special. He’s his big brother and that’s reason enough.

My plans changed and that’s OK. I’m still learning to let go of the relationship I thought they would have, but embracing their blossoming one is incredibly easy.

The Mighty wants to read more stories from siblings out there, whether it’s a favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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High School Officials Ask Special Needs Athlete to Remove Varsity Jacket

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Michael Kelley, a student at East High School in Wichita, Kansas, plays extracurricular special needs basketball.

Recently, Kelley’s mother, Jolinda Kelley, bought her son, who has Down syndrome and autism, a varsity letter to wear on his jacket like the other kids at school. She then found out school officials asked Kelley to remove the jacket, KSN News reported.

East High School’s principal, Ken Thiessen, told the KSN News that he and his staff had decided it was not appropriate to award official varsity letters in non-varsity competitions.

Kelley’s family wants to see a change made in the rules. School board members contacted by KSN have said they would consider supporting a district-wide policy to ensure kids are treated fairly.

It’s not just my son,” Jolinda Kelley, told the outlet. “It’s every student that was out there last night. It’s every student that’s there on Fridays that plays their hardest and to the best of their capability regardless what that is.”

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Read more about this issue here: Why We All Lose When Kids With Disabilities Are Shut Out of Sports

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50 Pieces of Advice for Kids Whose Siblings Have Autism

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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.

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