Things Never to Say to a Parent of a Child With Special Needs (In no particular order)

So this post has been a long time in the making. It is often in my head and on the tip of my tongue. Forgive me if it seems harsh or negative; it is my reality and that of a lot of other parents.

**DISCLAIMER** I know most people just don't know what to say and aren't aware of how their comments and questions sound. And some parents aren't upset by these things. On a good day, neither am I, but there are lots of days when my heart is raw and some things really hurt. AND - If you are my friend, don't obsess, this is not directed at anyone I know, just the ignorant public we have encountered over the last six years.

Things Never to Say to a Parent of a Child With Special Needs

1. "Oh, I'm sorry." Why? I'm not and she's not. She is a joy to our family. Do I wish I could spare her the struggles that lie ahead? Certainly, but I wish that for all of my children. Hers are just a different set of trials and are more visible to you than those that others face.

2. "What's wrong with her?" Nothing is WRONG with my daughter. She is exactly as God planned or allowed her to be. She does have cerebral palsy and she is blind, but that is not WHO she is. Can you imagine how she feels when you ask this question?

3. "You must have it so hard." People, motherhood is not for wimps! Yes, I have a lot of extra balls to juggle, but caring for my child is not a hardship. It's physically, emotionally and mentally draining, at times, but I would never choose to be doing something else. If you honestly want to help, offer to babysit for a couple of hours or plan lunch or coffee for us. I might not be able to do it spur of the moment, but I'd certainly enjoy the time away and adult conversation that doesn't involve a bunch of acronyms and medical lingo.

4. "Is she (fill in the blank) yet?" There is no time table or milestone chart for my child. I'm acutely aware that your 2 year old has reached more developmental milestones than my six year old and that she may never reach many more. If she starts walking or some other really huge thing, you WILL hear about it. But please, don't be afraid to ask me how she's doing. I like to brag about her just like you love to talk about your kiddos.

5. "It's so cute how she tries to (fill in the blank)" Don't trivialize her monumental efforts to do the things you take for granted. I wish you knew how many hours she spends exercising her muscles and practicing fine and gross motor skills. She works out harder than most adults, every single day. Inspiring? Yes. Incredible effort? Yes. Cute? No.

6. "She looks so normal." "She doesn't look blind." What, exactly, does normal or blind look like? And why does it matter so much to so many people? This tells her, because yes, she can understand everything you say, that if for some reason, she doesn't look "normal", or she does "look blind", that this is a bad thing.

7. "It's nice she's so good-natured." It's mostly the unsaid finish to this statement that hurts (because there isn't much else going for her or something to that effect). Isn't it nice when ANY child is a joy to be around? She is good-natured, a lot of the time. But you are not in our home 24/7. She is not always easy to handle. She has her issues and we are working on them so that when you do see her, she is polite and well-mannered.

8. "You are saint."/"You must be so strong."/"I could never do what you do." A resounding NO is in order here. I am taking care of my child, just like you do what's best for your kids. It may involve lots of things that you don't have to do, but if she was your child, you would be doing the same things that I am because we all want the absolute best for our kids. Would a saint get frusterated and overwhelmed? I even occasionally yell at my kids and then beat myself up about it. Yes, I chose this child, knowing some of her challenges, but make me a saint it does not. I am a good mom, this I know, but I am no more extraordinary than you are and being told that I deserve a pedestal makes me truly uncomfortable.

9. Complain about your kids' typical develpment ("I wish she wasn't walking yet, she just gets into everything." or "I have to chase her around all day." or "I wish I could tape his mouth shut sometimes.") I would give anything to have those "problems" and I want you to know how lucky your child is that he can be that active and communicative. Please, tell me about your kids' accomplishments, I'm delighted for you and for him, but don't act like it's an inconvenience that they are developing so well.

10. "What's her name?"/"How old is she?"/"Does she like (fill in the blank)?" Ask her yourself. If she can't answer, or you don't understand her resonse, I will translate for you. But please treat her with the respect that you would any other child.

11. "Poor little girl." We are raising all of our children to be as independent and self-sufficienet as possible. Everyone has things to overcome and a pity party does absolutely nothing to help this process. You damage her self-esteem everytime she hears you say that. And even if you don't say it, if you have pity in your voice, she knows that, too. Please speak to her like you would any other child her age.

12. "Will she be able to learn?" This absolutely floors me. Learning happens every day of our life, if we allow it. It's incredible what she has learned already and there is no reason to expect it to suddenly stop. Will she learn everything you know? Probably not, but do you know everything that I know? Learning is an individual process.

On the Other Side of Growing Up

Growing up was always what I wanted to do. Couldn't wait for the next milestone. License on my 16th birthday, get a job, buy a car, graduate, move out at age eighteen. I constantly looked forward and couldn't wait for time to pass. Fast forward to today. My oldest is 16, newly licensed, driving himself to college 5 days a week, and will graduate high school in December of this year. As Zach reminded me, he'll be able to vote for the next president! My beautiful middle child just turned 14 and is taking her first college class this semester. Raising kids has been the greatest experience I've ever had. Being a mom has always been my life's biggest goal; and it hasn't disappointed. Watching them unfold into Godly, fine, gentle, upstanding, moral, outgoing, funny, intelligent, well-rounded young adults is humbling and amazing. How did this happen so fast? I was just holding their hands in the parking lot... My heart has been full and achy these last few days, considering their futures. Watching them make choices and experiment with ideas of what to do, which way to go. They're brave, but not fearless; and for that I am thankful. They pray, I pray. God guides them and gives me wisdom to know how to shepherd them. I feel so honored to be their mom. I guess this is what bittersweet feels like. That's a word I never really understood, before. We want to raise our kids to be self-sufficient, independent individuals and in reality, the time in which to do it is so fleeting. The end of that journey is approaching fast; just around the corner. Although I'll never stop being their mom, my days of having a lot of input and direct influence on their choices are numbered. Hopefully I've grown into the sort of mom whom they will continue to seek out for opinions and advice. And just maybe, they aren't in as much of a hurry to move out as I was!

Hosting a Mystery Dinner

For Halloween, I hosted a Mystery Dinner for our homeschool teen group. It turned out to be a blast. I really wanted to do this event because I have great memories of one my mom helped me host in high school. A few people asked me for details, so, as promised, here is how I did it.

If you don't know what a mystery dinner is, it is a dinner where the menu is in code. You must order your meal, including your silverware, napkins, and sometimes drinks, in advance. Each course is cleared away before the next one is served. You may get ice cream and a toothpick for your first course!

I did some online searching and didn't come up with much, but I did find some things to inspire and help me. I decided to do a four course meal, so wrote up a menu of each course, with the perfect ordering combinations. Such as, course one should have you getting your eating utensils and napkin, course 2 would be salad and breadsticks, course three your main dish, nad course four dessert. I planned for more than one option to choose from so there was the potential of not getting any utensils, or having salad, appetizers and desert, but no main dish. There were two main dishes, several appetizers and two deserts. Originally, I wanted to have them order their water, too, but I couldn't come up with a good name for water. Also, my husband pointed out that if someone failed to order that item, they'd go the whole meal without a drink. So, I chose to have water on the tables. Next to each item on my menu, I came up with a name. Since, it was a halloween theme, the names reflected that. Fork was magic broom, breadsticks were skeleton bones and mexican lasagna was monster mash. Then I randomly wrote a number next to each item; I think I had 17 or 18 things. Now the fun part - designing the menu. I used Publisher to make a very cool menu. You can see the inside of it at the top of this post. The day of the party, I made a cheat sheet for the servers listing the items in numerical order, along with what they were. I think we had 1 server for every 4 kids and that seemed to work out well. I arranged the food in numerical order along the counters in my kitchen. A server would pick up a menu, locate the items listed for course 1, and deliver the plate to it's owner. The menu would go into a pile to be used again for course 2 and so on.

It was so much fun seeing what combinations people chose and watching their reactions. A few people actually did very well and some, well, they were good sports! When dinner was complete, I opened up the kitchen for those who didn't get enough to eat. I had such a great time planning and hosting this event and the kids had a ball. I got emails that night and facebook posts thanking me and telling me how much fun they had - that was cool!

If you are hosting a mystery dinner, and this helped you, I'd love to hear how it went.

A Special Concert

Tonight my family and I attended a very special concert. It was put on by Jeni's music therapist, Sarah Quinney, and her mother, Amy Quinney. Amy teaches piano and had several of her student's perform. Sarah is a music therapist and several of her clients performed on the piano, guitar, and vocals. It was so cool to see these kids and young adults given the spotlight and being supported by everyone there. People with special needs are so often pushed aside, ignored, and often treated with disrepect. Seldom do others take the time to get to know them, to look past the obvious and to see their uniqueness, their own personality, talents and intellect. Tonight was about celebrating what each one is able to do and to applaud that very best effort. There were no prizes, no competition. No one thought, "my kid did so much better than yours", no one worried, "my child didn't do as well as her." It was an uplifting and encouraging evening. At the end of the concert, Sarah sang, with the voice of an angel, "God Help the Outcast". There weren't many dry eyes, for it struck a chord with most of us there. I for one am so thankful for the things I've learned at the hand of a child with special needs. I'd give anything to keep her from having to fight the battles ahead, but at the same time, I wouldn't change a thing about her - she's perfect.

Jeni singing I'll Fly Away tonight. Sarah singing God Help the Outcast. Hope you can take the time to listen.

A New Beginning

Well, I see it has been almost 2 years since my last post. Guess I'll jump on the blogging bandwagon, again. I had to laugh at my post entitled A New Project; I'm still trying to lose that weight. In 22 months, I've lost 7 pounds. I'll keep at it and see if I can't kick it up a bit in this somewhat public forum!
I'm working on a new quilt project for a special friend - love to have someone in mind while I'm being creative. Today I bought a pattern and fabric to make a "little black dress." Been looking for one for quite some time with no luck, so decided to make one. The last dress I started still needs a hem in it and I won't tell you how long it's needed that.
That's all for now.

A New "Project"

Mom and I are teaming up to lose weight and get in shape. We started today and will be keeping a food journal. I'm trying to go to bed by 10:30 (usual is 12:30) and not snack in the evening. So today I walked for 30 minutes and didn't do too badly on the snacks - a pear and 2 pieces of baklava. I've got to drink more water, though. Maybe we'll keep each other on track. I'm also wanting to get back on the Flylady wagon. It works, so why do I quit? I'm also scaling back Jeni's therapy appointments starting in January and just the though of it is making me in a better mood already ( =

Dad's report

He doesn't have cancer! This is great news and quite unexpected. Why did the biopsy and PET scan show cancer and not the pathology? Now he has gone through a 5 hour surgery, is minus some salivary glands and lymph nodes when it would appear unnecessary?! The doctor is looking into these questions but we will focus on the words NO Cancer. YEAH!