Not Another Blog Post on Being a Parent to a Child with Special Needs…

Being the parent of a child with special needs, I read a lot of blog posts on what it is like. Everyone has their own opinion, their own feelings, and their own unique situations. I can’t speak for anyone else. But I see lots of comments on how people need to stop being so sensitive, or they are tired of hearing how they should parent. (I do find it ironic when people complain about someone being too sensitive when clearly they are sensitive in being told how to act. But that’s beside the point.) And yet others are wanting to learn more.

So here it goes, another post on what it’s like to be the parent of a child with special needs. And this is just one perspective. My child doesn’t have health issues, or major mobility issues. Mainly, he’s cognitively impaired and has some gross motor and fine motor delays. I’m not going to tell you how to parent. I’m going to provide you answers to potential questions you may have. Also, please feel free to ask me about my life. A favorite quote of mine is “Questions don’t hurt; ignorance does.” (Yes, it is from the Facts of Life.)

Guess what? I don’t think of myself as much different than my friends with children who don’t have special needs. I really don’t. Yes, I have a few more activities in my schedule that make it hectic. But I know other people who have their neurotypical child enrolled in a host of activities and they run around like chickens with their heads cut off. Until my son was in preschool, I was taking him to physical therapy and Early Intervention twice a week. I didn’t complain. I did it. Sure there were crazy days. Days when it seems like it would’ve been better to stay in bed. Everybody has those. Every parent has those.

Am I offended when you ask me questions like, “did you know your child had Down syndrome before he was born?” or “how high functioning is he?” The answer: Of course not. You’re showing interest in our life, our situation. You’re wanting to learn more. It’s an opportunity for me to advocate and educate, not get offended. So don’t worry whether you’ve phrased the question correctly or used the right words. I’m thankful you’re wanting to learn more. I’m grateful for your open mind.

Do I dislike the use of the word retard when used as slander? Yes. It’s saying that those with a cognitive impairment are less human than those without. I also dislike the word gay being used in that manner. And I don’t like the words nigger, Wop, Spick, towel head, camel jockey, kike, etc. I don’t let my kids call people names. And if you use them around me, I’ll politely correct you.

Do I think you should praise your kid for playing with a child with a disability? I don’t care. You’re teaching your child tolerance and to not discriminate. You’re doing a good job. Keep it up. If you told your child to walk away and ignore the child based on cognitive level or physical disability, well, that’s your prerogative too. Not one I would agree with, and quite frankly, you’re teaching intolerance and you might want to reflect on that. But I can’t make you do it. I can simply ask you to put yourself in that person’s shoes.

Is it OK to ask me how he’s doing and what his teacher says about his development? Yes. Please do. Again, it shows you care. It’s an opportunity for me to share what I’ve learned.

Is it OK for you to tell me the accomplishments of your child, even if our children are the same age and yours is doing much more? Yes! I’m happy for you. I’m not comparing my child to yours. Yes, I may wish my child could do those things, but I have to stop and reflect on what all my child has done and is doing, and I get my perspective back. If we are friends, please share your highs and lows with me. Just like you would any parent. My feelings are exactly that. Mine. I decide how to feel. And I want to share in your happiness.

In other words, I’m a parent. Like you. We all have different challenges. Some challenges are bigger than others. I can’t speak for other people. Just me. But if you know me and have wondered these questions, please know that I’m happy you are on this journey with me. It’s not a journey I expected to take. But I can honestly say I feel blessed to be on it.

Let me share my blessing with you.

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50 Shades of Anything But Romantic

So I’ve had no desire to read 50 Shades of Grey. The story line doesn’t interest me as I’m not into romance novels. (And I’m by no means a literary snob. I enjoy frivolous novels.) But from what I’ve heard, it doesn’t even sound romantic. I think a man insisting a woman sign a contract to date (or be his sexual partner, slave…whatever) is far from romantic. Guess I have old-fashioned ideas about romance.

Anyway, due to the hype I decided to read a sample of the first 29 pages of the book. Contrary to popular opinion, I wasn’t even the least bit intrigued. Yes, it reminded me of Twilight. And yes, I read them all. I blame it on my hormones as I was seven months pregnant. Let’s face it,  Edward is a stalker. Stalkers are creepy.

But reading the sample pages gave me some idea if I was being too harsh in my criticism. As I read those pages, I noted that Anastasia kept referring to Christian’s long index finger. I think there must have between three and five references in 29 pages to his index finger. (I already deleted the sample from Nook and was unable to count the exact number.) A bit much for 29 pages. And I could see where Christian might start to covet Anastasia.

After the second reference to the index finger, one particular image popped into my head:

gollum-one-ring

Yup. Gollum.

Gollum had abnormally long fingers.

Gollum coveted the ring. {Insert “my precious” in that gravelly, tortured voice.}  Kind of like the way it appeared Christian was going to covet Anastasia.

So I hate to even the mention the work of Tolkien, who is an amazing writer and storyteller, in the same paragraph as E.L. James, but this was my first thought.

And I am by no means comparing the two authors. One is a phenomenal writer. The other, not so much.

So there’s my two cents on 50 Shades of Grey. Is it unfair to critique a book without reading it in its entirety? Absolutely. Do I care? No.

I’m not a book critic. Just a person with a blog.

Angels Among Us

I was at the hospital today where both my children were born. The hospital has a wonderful cafeteria with an array of fresh cuisine. People actually go there just to dine. That can’t be said about a lot of hospitals.

Anyway, as I waited in line to pay for my pindi chana I thought I would see if I could leave some money to buy a young man lunch. Three years ago this young man, Tyler,  came by at just the right time after my youngest child was born. My youngest child has Down syndrome, as does Tyler. The day after I had given birth as I walked my baby around the maternity ward I ran into Tyler sweeping the floor. He stopped me and said, “Congratulations! He’s beautiful. Like me.” Tyler gave me so much perspective that day. Perspective that would take me a few months to realize.

So three years later, I decided to buy him lunch as a thank you for being kind. I asked the cashier if she knew the young man I was speaking of and she did. She told me that the hospital gives him a certain amount of money for his food and that he usually brings his own and just buys a cookie and milk. So there went that idea. But she asked if I wanted to wait around and thank him myself as he would be in the cafeteria soon.

So I waited. I looked around the hospital and recalled the sadness that overwhelmed three years ago. I saw the nurse who pushed my wheelchair to the door, gave me a hug, and told me everything would be OK and that she would keep us in her prayers. As I reminisced I realized how those tears weren’t really necessary. But that’s what worry and fear do–steal one’s happiness. I’m so grateful for her prayers, and everyone’s, as I had much to be thankful for: a healthy baby boy.

Then I pulled out my phone and looked at the video my husband had sent me the previous night while I was roller skating with our oldest. Our youngest was taking a tubby and saying, “Hi Momma.” He flashed his infectious smile and giggle. I smiled from the depths of my heart.

Tyler came over to meet me. I thanked him for his kind words three years ago, and how I never forgot them. I told him how I will always remember how he said my son was beautiful, just like him. I showed him a picture of my son. He then told me I was beautiful, just like my son. He asked his age and what he was wearing on his head. A hat with a fox face on it. It’s unbelievably adorable!

I thanked him again and told him to have a good day. We gave each other a hug and said farewell. Then Tyler turned around and said, “take good care of that little boy.”

I will, Tyler.

I promise.