Wednesday, November 27, 2013

15 things special needs parents are thankful for


The progress—every single bit of it. A new finger movement. A step taken. A syllable spoken. A word read. No development ever feels small or beyond squeals. (Ours.)

The therapists in our kids' lives. "I got Max to make a k sound!" said his therapist after his Saturday session and once again, she seemed like a miracle worker. (K's, p's and b's are particularly hard sounds to make.) Speech, physical or occupational, the therapists enable our kids and show us the way.

Their teachers, too. "Max has been blowing me away with all his singing!" a music teacher emailed  from school last week. Singing? Max was singing? She'd gotten him to sing? Just, whoa.

The cuteness. Ohhhhh, the cuteness. No matter what challenges our children may have, they are not the least bit cuteness impaired. 

Our kids' determination. No matter how hard a task may be, kids will keep trying to push that button, grasp that spoon, move that arm or that foot. And maybe they will succeed, maybe it will take months or even years, maybe they will figure out a whole other way of doing it or maybe they won't. But they don't know "can't"—they only know to keep at it.

The technology that gives our kids a voice. Max said something to me the other day, and I wasn't sure what it was so he tapped it out on the iPad. "Toysrus" he wrote. Oh. He wanted us to take him to Toys 'R Us. We might not always want to HEAR what's on our kids minds but thanks to the wonders of speech apps and communication devices, they can tell us.

Coffee. Coffee, coffee, coffee, coffee and...more coffee. Without it, we might never get out of bed.

And let us not forget: Pinot Grigio. [Or insert adult beverage of choice.]

Our children's adoration. Me, I'm "Ommy." And it is the best word ever. Before I was "Ommy," when Max didn't speak words, there was a special Mommy look of love.

Friends and family who treat our kids like any kid. No pity parties. Just people who know that even if our kids have their challenges, inside they are still kids.

Cracking up over the silly stuff. Because nothing feels more normal than laughing with your kid over a loud burp.

The babysitter. We need both a break and someone who knows how to take care of our kids. When that sitter shows up at the door on Saturday night, it's tempting to kiss her on the lips.

Empathy from other parents. Sometimes, all it takes is a little smile from a fellow mom when your child is having a sensory meltdown in Aisle 8 or on the airport security line to stop you from having one, too.

When the insurance company actually pays claims. Even if it took eight calls and the paperwork you sent got lost at least once and supervisors didn't have any clue what was up, the check really was in the mail.

All that our kids teach the world. Our kids are not "saints" or "angels" because of their mere existence, as some might believe. Sometimes, they are even brats. But they do show the people in their lives the many abilities in disability—and that amazing children come in all forms.

13 comments:

  1. I totally agree, Ellen! Except for the coffee! ;-)

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  2. Ellen....
    "All that our kids teach the world. Our kids are not 'saints' or 'angels' because of their mere existence, as some might believe. Sometimes, they are even brats. But they do show the people in their lives the many abilities in disability—and that amazing children come in all forms.". I love that!! ;)
    Happy Thanksgiving, Friend!! ;-D
    --Raelyn
    PS. My Mom always preferred chocolate over coffee!! ;)

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  3. I'm fueled by chocolate and Diet Coke but the rest is right on. I'm also thankful for your blog. For the reminder that there are others out there who get it and we are not alone and the tidbits that I pick up from you and other parents that make life just a little easier.

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  4. With my oldest ASD Kiddo I became "Sweetie". I called him it often and he associated it as a name you call someone.. So he started calling me "Sweetie". It was the greatest name I could have been given. And now he calls me "Mom" and I am sad he doesn't call me "Sweetie" any more. Although my daughter still does and my second ASD kiddo has started. <3 I love that I have my very own name for my kids, it is the greatest!

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  5. Oh how I love this!!

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  6. I will remember to smile at them. Thanks

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  7. I am autistic and I am thankful for band and music in general. We were meant to please God and I am happy to do so with the flute.

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    1. Anonymous....
      "I am autistic and I am thankful for band and music in general. We were meant to please God and I am happy to do so with the flute.".
      I just wanted to let you know that, as a learning disabled individual, this comment really blessed me!! Happy Thanksgiving!! ;)
      --Raelyn

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    2. Thank you for replying, Raelyn

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  8. I can totally relate to being thankful for coffee, my staff and therapists (I'm the special needs person), and empathy from other people.

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  9. First off, I love this blog. I loved this post about what you are grateful for. I believe this is how every family should think. That’s what so great about Thanksgiving. Unfortunately this holiday is overshadowed by the Christmas craziness. But it’s still a time for the family to get together and just be thankful. We take advantage of the little things and we don’t take enough time to really appreciate what we have. When working with individuals with special needs, I find that it makes you more humble. It makes you more grateful for the people in your life and for what you have. It’s imperative to not lose sight of what’s important and to never take advantage of what you have.
    I specifically enjoyed the part where you say you’re grateful for the therapists in your child’s life and how excited they get about getting your son to make the “k” sound. I think it’s a great example of the how everyone works as a team and has mutual goals and hopes for a child. That’s just another reason why I love working at a special needs school. Everyone there is for the right reasons and has the only best interest for the children. It’s never easy and it requires a lot of work but, I love every moment of it. I couldn’t imagine doing anything else. And yes, the coffee definitely helps.
    Another great point you made is that friends and family treat your child like any other typical child. I think this is something that everyone should really learn. A lot of the time I get told “It takes a special person to do what you do, bless your heart, working there would make me so sad.” The pity really isn’t needed and there’s nothing sad about these individuals. Their disability isn’t who they are and shouldn’t define them. Every child has their own specific needs and is unique in their own way but it shouldn’t stop you from treating like you would anyone else. It’s important to remain appropriate and consider what is appropriate for their age. I love the line where you say, “Sometimes they are even brats.” It’s very true! This goes along with the pity. Just because you have a disability doesn’t mean I won’t find you equally frustrating or annoying as any other child with a behavior. But, as a teacher it’s important that you don’t say it out loud! But, you make it known that their behavior is not acceptable.
    Lastly, I wanted to comment the insurance claims. I do a lot of documentation to make sure that everything is billed for and that our school gets reimbursed for all the work we do. Therefore, I understand how important it is to make sure that legally, your child is being taken care of. They should have access to free and appropriate education and receive all the services needed. Something as small as money, shouldn’t stand in the way. Keeping up with the task of paperwork isn’t easy.
    Again, it was great reading your blog. It’s always awesome to see how devoted parents are to their children from the viewpoint of a teacher. It a part of the child’s life I don’t get to see much. Having a voice is so powerful and I loved hearing yours. It’s a tool that more people should make use of

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Thanks for sharing!