Kalleigh walking her baby.

Einstein syndrome

Einstein Syndrome
by Miriam Kauk
Imagine that you have just given birth. You notice a sense of excitement in the room. Finally, the doctor comes to you with a big smile and says, “I have some important news to give you. Based on our preliminary examination, we believe your baby has Einstein syndrome!”
The doctor goes on to tell you that children with ES typically read by age three, and by six or seven read at a high school level. They can master many languages during their preschool years, develop phenomenal vocabularies, and complete high school by age ten or eleven and college by fifteen. Furthermore, children with ES have remarkable physical skills. Many Olympians have ES. And they tend to be excellent musicians.
Now, how are you going to treat this child? It is doubtful that you are going to leave him in his crib for the first two months, watching a mobile.
Instead, you will keep your child in a room full of activity. You will talk to him, naming items, and expecting him to begin to understand you. You will surround him with classical music. You will read to him as much as you can and begin teaching him alphabet letter sounds very early.
This child will go with you everywhere, just so you can teach him more about the world. He won’t be in a playpen; you will be giving him lots of opportunities to learn to crawl, and you will expect him to go get things himself. You will probably hire a nanny who speaks another language, and will likely enroll him in gymnastics or swimming classes.
Guess what? Even if the diagnosis was wrong, by the time your child is five or six, people will begin commenting on how incredibly bright he is. He will be an excellent reader, have a tremendous vocabulary, have a good ear for music, and be exceptionally coordinated, all because of the extra input that you have given him based on your expectations.
Contrast this with another scenario, this one all too real. After giving birth, there is stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. “Your baby has Down syndrome. Try not to let it ruin your life.”
As you read more about Down syndrome, this dreary prognosis emerges: Your newborn baby is retarded. He will learn to crawl and walk late. His language skills will always be minimal, and he will never be able to express himself well. This child might learn to read a little, but certainly not by the age that normal children do, and never well. Even as an adult, he will always do stupid things because he will never learn to think well.
With that dreary prognosis, how are you going to treat your baby? Why bother talking to him? He won’t understand you anyway. Why bother reading to him? He’ll never learn. Why bother even getting him out of his crib? He isn’t supposed to crawl for many months. And guess what? He doesn’t learn to walk, read, talk, or think well, just like they all said.
I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.
This baby may have physical problems. Maybe he doesn’t hear well. Maybe he has poor muscle tone or a heart defect that leaves him weak and causes difficulty with new physical skills. This little baby needs lots of extra sensory input just to balance his physical handicaps.
As a baby, my daughter, Mary would have been content to lie on the floor for hours sucking her thumb. As a toddler, she hardly demanded any attention. With five other children, I had plenty to do and easily could have ignored her. But Mary needs more input, not less. I needed to make a constant effort to interact with her and involve her in what the family does. As a result of all that extensive input, by the time Mary was three, she wasn’t in the least passive, but was on the go non-stop.
I have been accused by a social worker of not dealing realistically with Mary’s condition, of being in “denial.” Yup, I’m in denial. But as long as I believe that she is capable of normal function, I will be willing to give her the input she needs to get there.

This article was first published in the Teaching Home magazine in July/Aug 1994.Copyright 1994-2008 Miriam Kauk

IFSPs, cookies, books, and night-wakings...oh my

It's been a busy week. I am cookie mom for Reagan's Daisy troop--which means I am in charge of everything cookies. Finally got the orders in for the pre-orders so now I've got to get everyone geared up for the site sales.
Camden has been waking up in the middle of the night lately and crawling into bed with us. That would be fine except he is one of those flailing around sleepers. Not sure what is causing this but hoping it ends soon.
Kalleigh is having her IFSP (Individualized Family Support Plan) updated next month so all the therapists are doing their reviews for it. It's nice to know I am not the only one that hates these. I am with K every day. I know where she is developmently. I do my research. Believe me, I know. And you know what--I think she is doing great. I see progress. I am very proud of her. I see how hard she works to do things. I don't see a child with Down syndrome. I just see Kalleigh. We are who we are. I hate these reviews. I hate being told by a person who sees her a couple of hours a month where she is in regards to 'typically developing' kiddos. Thank you for telling me my 2 year-old child is in the 6-9 month range for speech. 12 month range for other skills. I DON'T CARE! I wish I knew why they feel this need to force these numbers on us. When I hear these numbers it feels like I got punched in the stomach. When I told one that I'll read the report if and when I feel like reading it, she reacted like I was a mother who didn't care about her child. Then she tried to reassure me by saying "Well Kalleigh has such a love for life". Once again...I don't need your input. I am the one who knows my kid. I don't need you telling me about her. So anyway, after crying in my car for awhile after her therapies, we made our way home. I dread when the school system takes over her care.
On a different note, K is absolutely obsessed with books lately. She is constantly looking through every book she can get. Bringing it to me to read. She listens in for bedtime stories of her sister and brother, gets her own story, and still throws a fit when we are done reading. I mean a falling down, screaming, stomping feet fit. Crazy.

Reagan's basketball

Reagan had her first game. It was a lot of fun and she seemed to enjoy herself. She shot the ball a few times but didn't make any. She dribbled well though. You can't really keep score when you're just trying to get the kids to dribble and guard and try to shoot. Here are a few pics.

More questions

So first thing this morning, before coffee or anything, I got another question. I think we need to find a nice church to start attending so they can help with this stuff. It's hard to find a place though. I compare everything to Dad and they just never cut it. I know it is more about me than it is the church. All these years and I still am not over some things.
Reagan: Where does God live? Well, he has Heaven but he can also live all around us. He doesn't need a house like you and I do. Does he have a phone number? No but you can pray. That is like a phone call to him without a phone. You just close your eyes and talk to him.

K and a popsicle

Here are some pics of K and her popsicle. She didn't like it at all. Don't know if it was the cold or the taste. It was pretty funny. She's not crying, that was just her expression.

Misc from the last week

A butterfly among a gaggle of geese

So Reagan started basketball last night. She did pretty well considering she has never really even touched a basketball before. She was the only girl on the court and there were 3 teams on the court. She reminded me of a butterfly among a bunch of geese. When she would make a basket or do something right she would jump and flap her arms like she was in a ballet. She'd look over at me and smile. She'd do her princess stances. The boys were, well, being boys. It just made me laugh. She had a good time though and we start games on the 24th.

Girls start early don't they?

I would not have imagined having to deal with this at the Kindergarten level. And if it is any indication of what it will be like during the tween and teen years, so help me. Reagan had a little friend she met on the bus who happens to live down the street from us. They would play together fairly well. Sometimes the girl's 2nd grade sister would join them. Then something changed and I still don't know what. This little 5 year old girl would yell at Reagan during playdates (over nothing), Reagan would cry and I would send the girl home. This girl would tell Reagan at school that she is not her friend anymore. Fine, whatever. But then she would show up at the house in the evening to play. Yesterday the girl's sister told Reagan that her "friend" hated her. I asked Reagan if she were sad about it. She didn't really answer. She seems okay. I tell her she has other friends to play with and different activities outside of school. I tell her what a great person she is why she is a great person. I wonder if this bothers me more than her. This morning I watched after I dropped her off at school and she went up to this little girl, but the girl and her other friend ran off. Reagan just ran off to play by herself. So do I just let them deal with it themselves? Talk to the girl's parents (which might make things worse)? Talk to Reagan's teacher to see if she has noticed anything? Start bullying the kid myself? I know not to do that but is what I feel like doing lately.
Oh yeah--Camden brushed his teeth with toilet bowl water this morning. He was in the bathroom so I checked on him and found him doing that. Lovely.

Questions from a 5 year old

Reagan has caught me off guard lately with all of her questions. I stumble out answers but they have not been that great. Some of her questions have been:

1) Why do vampires drink blood? (this came from the back seat of the car while driving home one night after Daisys) My answer: I'm not sure. They can't eat regular food. Something happens to their body when they become a vampire and then they can only have blood. It makes them scarier.

2) Where is Grandpa? He's in Heaven. Where is Heaven? Is it far far far away? Sort of. Can we go see him when school is out? You have to die to go to Heaven. Have you died? No, I am alive. Well if you die, don't you go to the doctor and get fixed? Sometimes a person's body stops and it can't be fixed. I really really really want to see Grandpa. I know you do honey. I would like to see him too.

3) Where did God come from? What? If God is a person and he was here long before there were people, where did he come from? I don't know the answer.

4) Why do you like me? This one was simple and I don't have time to write all the answers.

Wood works

Here are a few pictures of my wooden holiday decorations. I have more to make so I will update those later.