Friday, January 29, 2010

About Benjamin, Part I

The anonymous comment really got me thinking. In reference to our Disney trip, it read, "I just think it's sad that Benjamin wasn't included. He would have loved it too!"

Now I do not think this person's intent was to be malicious. I truly don't. I didn't take it that way. In fact, it may very well have been a person whom I call a friend. But let me explain. Not because I owe anyone an explanation, just because I want to. It is all interconnected to my thought process lately.

I tell you in all honesty that I am not sure that I would bring a typical 20-month-old to Disney. Vacations cost a lot of money to go on. So you want to get as much out of them as possible. For Disney, when you bring a toddler, you are definitely slowed down. Naps are a lot more important. Meals are a lot more complicated. The others of you can't all ride a ride together unless the toddler can ride, too. So selfishly, it was easier to leave him at home.

But Benjamin, as you know, is not typical. He has Down syndrome. Sure, physically, he does pretty well. He can walk around in the house well enough but struggles in shoes (therefore outside). He would have been in a stroller or in our arms the entire week except the few hours we were in the hotel room. Not exactly optimal for anyone, but especially for Benjamin.

In the lines for the few rides he could have ridden, we would have had to hold him the whole time b/c you can't have strollers in the lines. He is mobile and therefore would not have enjoyed it.

Would he have enjoyed some of the rides? Probably. The lights, the colors, etc.

But that takes me to my next point. Right now, he is 21 months old. Physically, I would say he is probably like a typical 13-month old. Can walk some but not for very far before he stumbles. He cannot go up stairs well. He has no depth perception, so when he gets on things (hearth, couch), he stumbles off, sometimes head first.

However, mentally and verbally, I would say that he is like an eight-month old. Eight. Months. Old.

This is based purely on memory of how Andrew was, and how other babies are.

He does not understand me when I ask him questions. He does not respond to anything but his name. If I ask him if he wants more milk, I may as well be asking him if he knows the quadratic equation.

He just doesn't get it.

He says no words. He makes sounds, and he has one sign ("more") which he uses very infrequently and often at the wrong times or when he doesn't even mean it.

At the library lapsit program (for ages 18 months to 3 years) yesterday, I was nervous before I went. I took Andrew to this program for four or five (six-week) sessions. He really enjoyed it. But I was so worried that Benjamin's delays would stick out like a sore thumb. I knew that since he wouldn't understand what the teacher was saying, he wouldn't be content sitting in my lap (or on the carpet square in front of my lap) for very long, so I had to bring his pacifier, which I usually only use for sleeping. I knew that when it was time to go up and get a book out of the box, he wouldn't have a clue what to do. I just knew. And I was right. Only it wasn't all that obvious b/c most people were busy trying to wrangle their own kids. But when all the kids were around the box of books, I put B right in front of it. Kids were grabbing books, and B just walked away, completely unaware that it was even a box. Not that I can let him have books anyway. He chews on books (even board books) and I have no way to explain to him that it's wrong. He just doesn't get it. When the teacher passed out colored, laminated car shapes to the kids, and had them stand up and dance when she called out what color car they had, I knew. Not only could Benjamin never tell what color car he had (which is pretty advanced for a typical 21-month-old, I'll admit), he didn't even know he was holding a car. Or what a car is. Or what a color is. Or what it meant to stand up when it was your turn.

Yes, he is cute.

Yes, I love him with all my heart.

But he is still a baby.

And I am not taking a baby to Disney World. I know many people do it. That is their choice. It was not ours.

The point of this post was not to bash anonymous at all, so please have respect and don't do it in the comments. The point was to show you that Benjamin is still very much a baby.

That is all for part one. Part two to come later. :)


Tricia said...

You are the mom and as the mom you know your child's needs and limits better than anyone. No matter what anyone else says or thinks they would have done, I know you did what was best for your family. God bless.

Aishlea and Brandon said...


Hope B is feeling better today!

My name is Sarah said...

This is Joyce. Wow, it is amazing isn't it? I just can't believe that you were questioned about this. But since you bring up the subject, I look at it in a whole different way. Not that you were not taking Benjamin but that you were creating a special time with Andrew. My husband I each took turns taking TJ on a vacation once a year without Sarah. It was his time. His time alone to have the full attention of mom or dad or both. I will cherish those times forever.

Shannon said...

i agree with tricia's comment... you are his mom, and you know best. period. we will be bringing hadley this summer and she will only be 19 months. will she have fun? yes, but she also thinks the grocery store is an adventure. will she remember it? nope, and i am ok with that. heck, even if i wanted to leave her, i don't have that option like you did.

i can't wait to read about part 2... i love how honest you are. mason is almost 4 years old and i still have to translate for him and it is obvious that he has trouble with his speech. i know that it isn't even close to what you have to deal with, but it is hard to see when your kid isn't doing/saying what their peers are.

Leah said...

Oh good grief! There is NO WAY I would take a child that age to Disney. NOPE! Typical or not...nope, I wouldn't take them. Not only are they only going to be frustrated and eventually bored, but they're not going to remember the trip! An over-tired toddler does NOT make a trip to Disney any fun at all. If someone ELSE wants to bring their child, that's up to them. But don't complain when you're frustrated because you couldn't do all you wanted to because your child desperately needed a nap in a bed instead of the stroller! that off my chest. LOL

JILL said...

Honestly, in your shoes, I would have been so afraid of more germs, too.

Man, I feel bad for you (and your area) for not having the baby Bookworm that the twins & I got to experience when we lived in NY. It was for 0-18 months (we moved when they were 15 months) and it was so wonderful - starting with the fact that no child had to sit on anyone's lap. They were welcome to wander and just about take the book away from the presenter. She did puppets, sang songs, had a glorious lady with a guitar (MaryLu Walker, a pro musician) come in to sing, and just allowed the kids to be kids. They would have fallen in love with B and given him the opportunity to participate and shine in his best ways.
I attempted library story hour here in NC and it was horrible. Silent little children sitting politely on their Mom's laps... super non-age-appropriate. Certainly not the environment Frick & Frack were thriving in. I tried 3 different times all with sad results.
whoa...rambling. Sorry!

I support you in your decision to give Andrew a special time with Mom & Dad before Thomas arrives and to allow Benjamin to have Namma all to himself as well.

Amber said...

Sister, neither of mine are going until they are both old enough to "get it!" Even if Carsyn's 8 (abuse! abuse!). That's my decision as a mom. And of course Grace is under a year, where you place Benjamin in his development. There's no WAY I'd dream of taking her. For me, it'd be a waste of a trip for her to go now. You and I both know that none of our children are deprived because they are denied Disney World! They have awesome mommas and are loved.

Jenn said...

My parents are currently in Florida, and I had the option of flying down with Veronica (who shares a birthday with Benjamin). Veronica IS a typical 21-month old, but I still would not even consider taking her to Disney... it would not be worth the money, or additional effort and time required for a toddler. I absolutely would've done the same thing you did.

Ginger said...

Oh, Angela. My heart goes out to you for having all of these thoughts. I'll admit that I too wondered why B didn't go, but I figured you had your reasons and that was good enough for me. I would never have criticized you for your decision (anonymously or otherwise). You're an awesome mom to all of your boys. I know that B will reach many of your goals for him, in his own time; and he will have plenty of vacations with the family in the years to come.

Jenn said...

I totally get where you are coming from and I think the trip was a really nice time to spend with just Andrew.
I haven't taken my kids to Disney yet - because for us, there's a lot of the same issues, only my 'baby' is almost 6, and is for all intents and purposes - in the 2-3 range. We do things as a family sometimes, and sometimes Joey gets taken to my parents place, so we can do things with the older boys that they wouldn't get to do with a toddler brother in tow. It's hard having a special needs child, because they require so much more of our time and resources as parents. It's hard on the siblings, because they need us too.
It sounds like you had such a nice time at Disney :)

Diana said...

I think things went great at Lapsit!! Ellie is a *normal* 18 month old and Lapsit is slightly advanced for her. She can follow the simple instructions, but has a hard time sitting still and obviously doesn't know her colors. It was great to enjoy the time with you and B and I hope that as the weeks go on it because more comfortable for you!! Lots of LOVE!

and on the Disney note, I have taken a baby to Disney and it was difficult BUT no where near as hard as it would be to take B with all his physical limitations and dietary restrictions.

Todd and Courtney said...

I am just so sorry people leave comments that are anonymous in the first place. I've always hated it. It's like they are "secretive." I think it's awesome you got to take Andrew on his own big boy trip. It's so sweet and wonderful you can even do that, with your mom being close by. We don't have family in the area but if we did, I'd soooo do that :)

Iva Catron said...

unfortuantely,Angela, this is just the first of many "constuuctive critacisms", "suggestions","observations" ect... that you will have to deal with throught Benjamine's entire life. Trust me I know! The thing you have to remember is that most people have no idea what it is like to spend ONE DAY in our shoes, let alone to have two children who have completely defferent needs. I think there is already so much guilt that comes along with having kids like ours while having "typically developing" kids b/c going to disney is not the only thing that Ben will not be able to do like Andrew. I also know that with my boys they have so many medical problems that it takes away from the time and attention that Hunter gets, and that makes you feel just as guilty, so why should the other child not get some special time with you? When you spend a week or more away from one child to be with another, even though you don't have a choice, there is no way to explain that feeling.
That being said I think a lot of the time, as you said, people don't really mean things in a bad way they just don't realize how it sounds or how it feels to a mommy's heart who has had to make these diffacult decisions for the best for her child.
our lives are not ones that are easily understood by others, but take it from someone who knows EXACTLY what you are going through, you are an awsome mother and God gave you Ben b/c he knew you were the very best parents in the world for him, and God does not make mistakes!

paula said...

Reading all of this sure makes me cry! Your dad and I especially needed the week you guys were in Disney. That time we spent with Benjamin was valuable because it allowed us to care solely for him and know we CAN take care of him. I am looking forward to the day when he can talk to us and love us back! I didn't think it would all get harder as we went along, but at times it is even sadder. The best thing is that Baby B is so precious to us.I miss our happy B. He hasn't been himself for weeks. Maybe next week will be easier on all of you.

Branton Family said...

Oh, how I wish we lived closer...

Michael said...

yeah, Jack is 9 1/2 months old. There's no way I'd take him. He wouldn't enjoy it anymore than walking around Walmart for 3 my arms would fall off from holding him for a week straight!

Jill said...

Angela I am so sorry someone questioned what you did as a parent. Kenzie is Andrew's age but developmentally she is around 24 months. I really want to take a family vacation to Disney this summer but I am not sure Kenzie will get it so I am not sure it is worth it. I personally thought you did it because it would be a great Mommy, Daddy, and Andrew experience. I know that when both Benjamin and Thomas are both old enough to get it, you and Matthew will take them on each of their own special Mommy, Daddy, and them trips.

Keeley Bug said...

I know Andrew probably loved the special time with mommy and daddy! And we all know that your mom was in heaven with Benjamin!

I sometimes dread taking Keeley to the mall for a few errands... Disney? NO WAY!

Lorelei said...

I am totally with you. We've always said that we wouldn't go to Disney World until our youngest was 5. But, if we lived close to our family and they were willing to watch the baby, we would go in a heartbeat! He is your son and you love him with all your heart. There is no way you would do anything that would hurt him in anyway.

AngieW said...

We struggled with this same issue last summer when we went to Orlando and went to Universal. Our situation was different in that I was still nursing at the time and our Ben only 14 months and was not walking yet. In the end I am glad we took him, but it did make the trip a bit harder. If you had fun and enjoyed yourself you did the right thing.

Anonymous said...

I brought my 20 month old to Disney. He has Down syndrome. It was worth every second. Disney takes such good care of families, you missed a neat experience of them taking care of you! But yes, that was your decision. No loss, no gain.