The IEP

We had Eon's first IEP last week. Whew. I was a wreck before hand, having read/heard all kinds of horror stories. I really didn't know what we wanted for him, so that was worrisome, as well.

I am a huge proponent of inclusion for school, but the first year of preschool seems more like an extension of early intervention to me, versus actual school. 

Eon scored so well (average) on social skills. He had no problems attending to and participating in group activities. I know he would do very well in a typical preschool setting. What I didn't know was whether or not he would be pushed to excel in that setting. My fear was that they would think he was cute and tend to baby him. 

My sister is an OT in the school system. She has seen that first hand. She's watched as a child with Down syndrome was allowed to skate and not required to hang up his backpack or stay in line with the other kids. She's not sure if they just excused him because he's cute or if they just had lower expectations for him.

Eon needs to be pushed. He will do the minimum he can get away with. :) We know Miss Elaine, the developmental preschool teacher won't let that fly. So, when they recommended developmental preschool initially, with the option to move to community preschool when we feel he's ready, we jumped at it. We feel it's a good plan and fits his needs.

I freely admit to tearing up when they started discussing the bus, though. I'm just not sure I'm ready to put my three-year-old on a school bus and watch it drive away. They recommended starting with sending him home on it. That way, he can just get on it with his friends. I got the feeling they've dealt with sappy moms before. We'll see. I can totally see me stalking the bus the first time he rides it.

Some other good things about the meeting were that they seemed to really like him, which every parent enjoys hearing, and, the psychologist seemed to have a good grasp on how limited IQ testing is, especially for kids with decreased communication like Eon. I was prepared to tell him all of that, so it was nice to have him beat me to it. 

Overall, it went well. The only surprise was that he starts a full week earlier than I'd anticipated. A week from tomorrow. Just ONE week.  When he's still only TWO. Sigh. I don't think I'm ready for this.

Open letter to the Medical Director, Kidney Transplant Team, CHOP

I read this post and I had a visceral response. I amended a post I wrote a few months ago and responded to what I see as a complete injustice.


Open letter to the Medical Director, Kidney Transplant Team, CHOP:




Dr. Baluarte,

I am certain that you are excellent at what you do. You did not obtain your position without stellar skills. I am wondering, though, if you remember why you became a doctor in the first place. Was it because you wanted to help people? I'm sure that was a lot of it. I'm also sure that you have helped many, many people. And yet, there are some people you deem unworthy of a life saving procedure based on what you and your team perceive to be "low quality of life."

At one time you pledged to have unconditional positive regard for your patients, to not discriminate based on who a person is. 

And now you are. 

No one can truly appreciate another's life experience. Who should decide whose life is valuable?

The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs. 

We work hard for every dime we bring in. We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks. 


But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't it have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because my son with an intellectual disability will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto children to the point that, if they can't meet them, we decide that they must die?!?  You look at a list of diagnoses and make a judgment on the quality of that life. 

The list never told me that my child with Down syndrome would:
* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets


No list of diagnoses and potential problems could EVER accurately describe the life of a person!  I hope that you will reconsider your stance on this. I hope that you will view people with intellectual disabilities as just that...people. Amelia Rivera deserves a transplant. You need to give her one.

Sincerely,

Mrs. Tara Lakes

www.simeonstrail.blogspot.com

Hmmmmm

My subscription to Reader's Digest recently ran out, so there are only 2 magazines that actually come to my house. Both of them are free, otherwise, they wouldn't come either. One is a local homeschooling magazine that I rarely read because it just makes me feel guilty and the other is a magazine that I devour, not because I necessarily agree with all it represents, but because I find it fascinating.

It's called Above Rubies, self published by Nancy Campbell, and its stated purpose is to encourage mothers. There's a whole lot about eating organically healthy and other things that I tend to skip over, but I really enjoy the personal stories from her readers. Many of them have a certain "I've got it all together" tone that I find annoying, but it rarely makes me mad.

Until now.

This issue, there is a section of personal stories about women receiving the "Wrong Diagnosis" while pregnant and how they responded. The first story sent my normally very low blood pressure through the roof. Of course, the "diagnosis" was Down syndrome. They used the term "diagnosis" very liberally as most of the women simply had the early blood screenings which indicated they had a higher risk of Down syndrome, and declined the actual testing that would have given an actual diagnosis.

Of course, because of their prayers and faith, they did not have a baby with Down syndrome. 

I wrote a letter to the publisher. I haven't received a response. Shocking.

Dear Nancy,

I am a long time subscriber and avid reader of Above Rubies magazine. I usually devour the magazine from cover to cover as soon as I get the chance. Issue 83 was no different for me. To say I was disappointed is an extreme understatement. From the moment I read your intro in the section titled "Wrong Diagnosis",  I had a bad feeling about where it was going. While a bit inaccurate (no physician would encourage termination for Down syndrome without a confirmed diagnosis), you are correct that the medical community does indeed often push for the termination of Down syndrome pregnancies. In fact, the current estimation here in the US shows 92% of confirmed Down syndrome pregnancies are terminated. I have one friend who was told of her positive amnio results and immediately informed, "I will call and schedule your termination for as soon as possible." When she adamantly declined, her obstetrician's office phoned her THREE more times to inform her that she was running out of time to legally abort. It is a travesty.

However, when I read the individual testimonies, my heart sank. It is no wonder to me that the world finds little worth in individuals with Down syndrome, when we in the Body of Christ believe it is something to "fight and pray" against (My Prayer Warriors) and that only babies born without it are "perfect" (My Prayer Warriors) and "healthy"(Infertile!, I'm Glad We Didn't Listen). I found the tone of some of the articles to be bordering on arrogant, indicating that the reason their babies were born without Down syndrome is because of the prayers they offered or the attitudes they maintained during the pregnancy. I think that kind of thinking is not just offensive to me, but also to our Heavenly Father.

Here is my story: I have always refused the routine blood tests which screen for things like trisomies, spina bifida, and cystic fibrosis. I know that these are not definitive tests and the only way to be sure is to have an amniocentesis or CVS. At the level 2 ultrasound for baby #6, the technician thought she saw something of concern with the baby's heart. Because of my age, 38, I was sent to the maternal fetal specialist for another scan. There, the heart looked fine, but the bowel on our baby boy looked bright, a marker for Down syndrome. I was offered and declined an amnio. I rightly assumed that our baby was being fearfully and wonderfully made in the secret place of my womb and went on to enjoy the pregnancy. 

At exactly 39 weeks, I gave birth to a 7lb, 10 oz perfect and healthy baby boy, who also has Down syndrome. We are very proud of our son's "designer genes"! We know that he was indeed fearfully and wonderfully made and created in the image of an Almighty God. At 3-years-old, he is very much more like typical kids than different. He enjoys playing cars and wrestling with his older brothers and he is as gentle as a 3yo boy can be with his baby sister. We like having him in our family so much, that we are moving forward to internationally adopt another little boy or girl with Down syndrome. 

I wish people in the Church would get educated. I wish that they would seek information to see beyond the common myths associated with Down syndrome. Our son is not an "angel". He is most certainly not "happy all the time". He is not "downs" or "mentally retarded". He's a little boy who happens to have an extra chromosome. Because of that, it takes him a little longer to learn things that come easily to other children. He will learn to read, ride a bike, and, hopefully, drive a car. Young adults with Down syndrome are attending college, working meaningful jobs, and even getting married. We have high hopes for our Simeon. But, even if his intellectual disability causes him to live with us as an adult, we know that we have been given a gift and we are forever grateful. 

I hope that we will see more positive stories of people and children with disabilities in your magazine in the future. I hope that you will join us in working to remove the fear associated with parenting a child with special needs. Not all the gifts that God gives look the same, but the joy and the rewards are completely worth the challenge.

Sincerely,

I'll let you know if she responds.