I'll start by saying that I mostly keep a blog, so that other parents who are considering adoption, and specifically Down syndrome can come check it out, and get acquainted with the idea, and explore a bit vicariously, since for many it can be a foreign idea, and overwhelming. I learned most of what I know about Down syndrome through the blog network of Reece's Rainbow parents, and definitely was much more prepared for what we encountered with our children. I have tried to show the beauty of my children, which is what entrances me about them, and is why my photos are flattering, for the most part (I don't like unflattering photos of myself, so why would my kids?) I have tried to tell the down and dirty reality though, also, without scaring off poor innocent souls. I want people to understand that it is hard, hard work, and very, very slow progress, and can be discouraging (a lot) but also that if you want to jump in and try, you'll have beautiful rewards, and precious children.
As a parent, I've had a lot of correction of my expectations. My kids were much more beautiful than I expected, and my family says it's just me, that it's my eyes that see them this way, and that they're not any more attractive than the rest of the kids out there. There may be some truth to this, as I now think that I have the most lovely children with Down syndrome ever to walk the earth. I look at them and marvel, and am not surprised when strangers compliment me on how adorable they are, and I'm always surprised when people look at them askance. Can't they see what I see?
Back to expectations: I expected that homeschooling our children would produce little professors, and although they were mostly all good students, some of them ended up full of trivia, and some of them ended up being really interested in and good at stuff that we didn't actually teach them. I'm still disappointed that after all that handwriting practice, I'm not close to satisfied, we have no great spellers, and all those years of piano lessons were wasted (unless you consider how much the brain works both sides while reading music, and playing with both hands-- this is how I comfort myself.)
A big family was a lot more noisy than I anticipated-- actually painfully so, sometimes, and a bunch of my kids get along so much better than I ever hoped-- but some of them don't get along at all, and that hurts me so much.
When we first met our Little Boy, I felt quite comfortable diagnosing him with some form of autism, either intrinsic or at least institutionally induced. He let us know in no uncertain terms that we were not part of his world, not welcome in it, and the sooner we left, the better. He had classic characteristics: staring at lights, fascination with inanimate objects, spinning things and flashing lights, hand flapping, rocking, and forget about eye contact. I knew it the minute I saw him, and the first day we saw him was the day we were asked to decide if we wanted him or not. I had no hesitation in saying yes, because I'm always up to a challenge, had traveled around the world to get him, and wasn't going to go home without him if I could help it. Later I had doubts, lots of them, and expressed them to my husband. He's very unemotional about stuff like that, and said, "He'll be what he'll be. We'll give him the opportunity to come out of his shell, and get to know us, and if he does, he does, and if he doesn't, then that's his choice, and there's not much we can do about it. Either way, he'll have a better life than in the orphanage, and he'll have the chance to have an actual childhood. It's just our job to be obedient to God, and raise him the best way we know how." So, it's always been pretty black and white about Little Boy. I said, "It's a good thing we got three, because the girls make up for the fact that he doesn't give any warm fuzzies!"
Big Girl felt like mine from day one, even though she wanted to attack me to pull my hair. I knew she wanted to be loved, wanted to have a mommy who loved her dearly, and she was so affectionate, especially to me, and seemed to know that I'd come looking for her. It took no time to cure the hair pulling once we got home. She is the most socially awkward of the three, though, in spite of being much more people-oriented than Little Boy, because she doesn't know how to make a pleasing impression on people, and just wants to jump on them, "Love me! Love me!" She can be intimidating, believe me. She also makes a lot more weird sounds, faces, and mannerisms than the other two. Just makes me wonder if she has some medications in her past.
It took a long time for Little Girl to feel like she was mine, because she loved everyone, and expected everyone to love her back. She got a lot of attention for being so cute, and still does. As people often said, "She sure knows she's cute, doesn't she?" She has been very persistent, though, at treating me like a mother, and because of that, I know she's bonded to me, and I'm bonded to her. I'm the first person she wants, seeks out, follows and emulates.
I didn't feel warmly toward Little Boy for a long time. I felt like I was babysitting, but my two sons took him into their hearts from the first moment. A brother! I think that's all it was, and he was politely receptive of their enthusiastic overtures. To this day, the boys believe that he's the smartest of the three little kids, even though he consistently performs about 6 months behind the girls on most things, except talking and signing, in which he's way behind the girls. He is still not as emotionally available as the girls are, but we leave him to his own devices, for the most part, and little by little, he has approached the family unit, learning by watching others, and eventually taking part. He has finally learned to give a kiss. For a long time, this was not something he felt any obligation to do. He had no interest if you kissed him, and certainly wasn't going to waste effort trying to kiss you. But finally, he does. I can see that it makes him very happy to make that connection, and we are happy for these tiny things that he gives us. He would still rather play outside all day by himself, but surrounded by love and warmth, he is slowly responding. I don't want to give the impression that we require nothing of him. He is expected to respond when called, come to the table for mealtimes, hold hands and be quiet for prayer times, and take his turn at the potty. I had to insist that he learn how to dress himself, and he still likes to play helpless when it comes to that, but once he has mastered a skill, he is very proud of himself. It just takes a lot of crying, and tantruming first.
I hope this post helps some of the other parents who feel like their kid isn't what they expected. Sure, I feel like they do, in thinking that I'm not doing everything I can do to help them reach their full potential, but I'm also cognizant that some of these kids have a lot of healing to do before they can even start on the full potential path. After the healing makes it possible, many of them need to revert to an earlier age to fill in gaps. I think our three are at a two year old stage right now, with lots of need to be independent, need to figure it out for themselves, and not just take our word for it, which means lots of ignoring and even some defiance. "You don't know what you're talking about" is written right on their faces, but more often it's "You're not the boss of me!" Three kids with this attitude is a lot of hard work, and the world is a dangerous place for a kid with this attitude. It's scary, and I hope they grow out of it in a timely fashion, even though I know the Down syndrome clock seems to run on a different sort of time.
Little Boy "helping" Dad. |
Actually, he's pretty much in his own world here. He loves water, and he loves being outside -- no boundaries. Can't keep shoes on him, either. |
I believe that nature is very healing, and offers an amazing array of ever-changing stimuli. |
This little girl pulled a television set over on herself. Fractured a clavicle and the top of the humerus. Orthopedics consult said a sling is the best way to go nowadays. No casting needed. |
Been something of a crab with her owies, but she adapted to the sling quickly, and learned how to do everything left-handed. |
Here's Big Girl, who's always happy to give Mom some smiles, although she starts to get over the top with the extra attention, and starts throwing herself around, and laughing like crazy. |
One thing's for certain, this is a happy little girl who loves life, and loves her family. She is happy to be here, I have no doubt! |
I am so happy that God chose you to be their Mom! You are doing a fantastic job and should be applauded!!! Your children are all some of the most beautiful children with DS ever and as the orphanage doctor told me: "They don't even look like they have DS anymore." That's the difference love can make!!I can see it!!
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