Parenting Micah

I have recently discovered a book called Fasten Your Seatbelts. It's a crash course on Down syndrome for brothers and sisters. I figured that it was a must-buy because even if the kids didn't read it, I may gain insight on how to help the kids deal with Micah-related issues.

Oh. My. Word. The book is eerily all about Micah.

There is a section where kids wrote in and had their questions answered. Questions like:

Why is my 18 year old brother obsessed with watching the same movies over and over?


How can I get my 16 year old brother to understand the importance of modesty? He's always walking around in his underwear when company is over.


Why does my brother always have temper tantrums?


My brother is a perfectionist - everything has to be "just so." Why does he have to be so stubborn?


Sometimes I feel as though my brother pretends he doesn't understand in order to get out of doing things he doesn't want to do. How can I tell if he really doesn't understand or if he's trying to pull a fast one?

Okay, first of all, we are so hosed. Second, it's a bit reassuring to know that we are not the only ones dealing with issues like this. And third, we are so hosed. If sixteen and eighteen year olds are still exhibiting the behavior that Micah is, how on earth are we going to have the stamina to battle this for a lifetime?

God, give us the strength. You gave us the child, after all.

I take comfort in all of this though. We hear so often that Micah is so spoiled, that we treat him very much like the baby of the family, that he just needs disciplined. While I will be the first to concur that Micah is spoiled (and by spoiled I mean he gets away with things the other kids never did, not that he never has to listen to us), there are also many areas where that's not the case. Obviously, we are not first-time parents. We've parented three other kids before Micah happened along and we know that kids left to their own devices are out of control and cranky. We know that the parents must be the parents. We know that kids thrive on boundaries. And yet, Micah came with a different set of rules that changed everything that we knew. Unless you have a child with a disability, and maybe specifically one with a mental handicap, there is absolutely no understanding this. There is also no describing it, so I won't even try.

It's so reassuring to know that this is Downs. This is not us being the worst parents ever.

I remember clearly the time that we moved him out of his crib and into a toddler bed. I did this because he was climbing out of his crib, not because I thought it would be fun to have him grow up. We had mucho difficulty keeping him in his bed at naptime and bedtime. Someone who was very well meaning gave the advice that we just needed to discipline him every time he got out of his bed. This is exactly what I'd done with my other kids, who learned after the second time I returned them to their big kid beds that they needed to stay there. But I knew that Micah would be different, and was hesitant to try. And yet, I had guilt because Micah was not very obedient in so many areas, and this reflected badly on me as his mom.

Forty five minutes later I stopped returning him to his bed because I realized that he just wasn't understanding the concept. Either that or he was just more stubborn than I was. Either way, I was getting nowhere with it. Micah came with his own set of rules, and that day I realized that nobody else understands what it's like to parent him. After that I chose to feel no guilt when someone points out that my child is spoiled. I chose to ignore well meaning family and friends when they tell me that I just need to discipline him when he doesn't listen. I chose to be his parent, and do my job guilt-free.

If someone has a problem with my spoiled, undisciplined son, I have decided that it is clearly their problem and not mine. Parenting is not the easiest job in the world to begin with. Parenting a child with Down syndrome takes that difficult job of parenting and adds several new dimensions. We're simply doing the best that we can, just like every other parent out there.


Karen Deborah said...

your right only those who have walked in your shoes understand. He does get away with bloody murder, you do parent 3 other beautiful kids, and God did hand pick you to be his mom. He knew exactly what he was doing. I can't even begin to imagine what a kid that cute could get away with, with me. All of the above and more.
You love him with all your heart and that is what every kid needs.

Viv said...

Your love for your children comes through in each one of your posts. Your strength ought to be an inspiration to us all. I am happy to see that you are giving yourself credit for being the wonderful mother that you are. Thank you for making me smile tonight, and for making me proud of all of us moms. The awards are few in this line of work, but, the rewards are plentiful.

Anonymous said...

I ♥ you so very, very much. It is so very frustrating when the rest of the world thinks they know how you should parent your child - I can't even imagine how infinitely that frustration grows when the criticism is coming from someone who has no idea what parenting a special needs child entails. Micah is one very lucky little boy to have you for a mom, and we are all very lucky that you share him with us!

the planet of janet said...

micah is the lucky one... and all those people who tell you differently can suck it.

so there.

Brandie said...

This was so nice to read. I really feel like things are harder because Goldie has DS. It took me two years to admit that. I used to say it was just hard because she was the 3rd. My MIL told me if we just treat her like she's normal she'll be normal. So far that hasn't worked, with any of my kids. Ha!

JennyH said...

well said! I'm sure many people (including family) think I let him get away with too much or that I don't do anything about it. I just know what battles to pick and to let the little things go.

It's a very tiring job!

The Sports Mama said...

While it is totally true that the differences between Micah and Bug could fill several lifetimes, the similarities in the mental and emotional attitudes we need to parent them anywhere outside of our homes is so similar. You've heard what I find myself constantly up against when people, well-meaning but completely clueless, try to tell me how to parent my bipolar child.

"If someone has a problem with my spoiled, undisciplined son, I have decided that it is clearly their problem and not mine."

Thank you. Really, sincerely--thank you. I needed the release I got from the tears that statement brought on.

I am so amazingly thankful we are friends.

Flea said...

Shoot. What other mom would let him have that awesome golf ball collection? And be cool with him running around the yard nekkid (you really need to move to Florida or Arizona where he won't freeze doing that)? Yet so ferociously fight for his rights?

You rock the mom world, Karen.

Trannyhead said...

You know, I get the sense your kids won't NEED a book like that. Maybe it's because they're older siblings, but I like to think it's because you guys rawk. I mean ... they seem patient with Micah's abilities and disabilities and seem to accept him for what he is. Though I certainly hope for your sake he's not walking around nekked at 16, I imagine your other kids will be very patient with him.

Blogget Jones said...

Bravo for you! The most anyone can expect is the best you can's all you have to give! And personally, i think you're doing beautifully. In my humble opinion....

;o) BJ

Karen said...

Wow, I need to learn guilt-free parenting! As a new mom, I find this to be very challenging. Parenting twins has its own set of rules as well apparently not seen by other moms in my family.

God Bless Micah. I love hearing stories about him. said...

Amen, sister! You said that very well and I totally understand where you're coming from. Things are very different FOR Micah, therefore they are different for you as well as how you deal with him.

Debbie Yost said...

First, I so need that book!

Second, although I agree with you 100% there are times I wonder if I'm doing it wrong. Even hubby tells me I spoil Peanut. It's really hard to get Peanut to eat and I get frustrated with the battle sometimes. We have to force her to take a bite or two before she will even try her food. Some people probably think we are awful parents when we do this, but after we do this she starts eating. Meal time is such a hassle and she eats better for her dad so of course that reinforces his opinion that I spoil her too much.

caramama said...

You know your child--all your children--best. All that well-meaning advice is from people who don't know what it is to parent your child. I love that you have decided to parent guilt-free. It makes you an even better mom, in my opinion!

Junior bed mom said...

Oh wow! I am moving my son into a toddler bed soon and have no idea what to expect. Thanks for sharing your experiences.

BeautifulWreck said...

While my child does not have Downs he will have a lifetime of behavior problems that medication just will not fix. I pray everyday for strength. It still bugs me when people judge us or better yet comment on our parenting of this child. I wonder if I will ever get over it.

Michelle said...

I cracked up reading those, too... and hopefully the other siblings will read the book someday. You are definitely NOT bad parents, and I'm glad you found something to validate yourself!