And I Learn as I Go, by Down Syndrome Express

With the opening of the new movie “Tropic Thunder” I am reminded of my own journey with the word “retarded.” It was part of my vocabulary growing up, as in, “Oh, that was so retarded.” I didn’t think about what I was saying, or maybe I did and it just didn’t matter that much to me. Fast forward to January 2, 2006 when a son with Down syndrome blesses my life with his birth and my understanding and use of that word changes drastically.

When we were about six months into the adventure of parenting a child with Down syndrome, I received and accepted an invitation to visit a weekly women’s group consisting of women from my church. I was deep in a time of learning more about becoming authentic, and learning much about being the parent of a special needs child, and dealing with pumping breast milk around the clock for my little son who couldn’t seem to latch on properly, so it was a very emotional time.

The women’s group was a pretty typical group of ladies who brought both pain and love with them to the meeting. Throughout the evening, I found myself feeling very defensive on behalf of one of the women because I felt like the other women were giving her the message, “Just change your mind and get over this stuff.” At some point, I decided to back off and was nursing some hurt feelings. One of the women I was least comfortable with happened to say the following: “I think dogs are like retarded kids. You can only teach them so much.” Since I was still adjusting to the idea of parenting a “retarded kid” I was aghast, stunned, and overcome with grief. Another woman held me as I cried and no one talked about what had happened. The woman who had made the comment did not know about Kepler. I left the group and never went back and never saw her again. Until . . .

Last week in J.C. Penney (two years after the original event), as I shopped, I caught the eye of a woman pushing a stroller and thought I recognized her. I glanced at her again and sure enough, it was the woman who had made the comment. What I was making up about it was that she recognized me but was ignoring me and I had to choose whether or not to acknowledge her. I knew that I wanted to make peace with this woman, so I asked her her name and reminded her of mine and how I knew her. I told her I was so sorry about what had happened that night and I told her about Kepler and how much of a blessing he is and how early it was in our life with him. She told me she knew she had said something wrong but had no idea what it was. I hugged her and again apologized and told her I was so glad I had run into her after all this time. I think it was the perfect time, actually, because I was definitely ready to stop judging her and mend the broken thing between us. She had tears in her eyes and so did I. I love when we get the opportunity to find healing.

Bless Them (by The Down Syndrome Express)

When I was in fifth grade, I spent the night with my friend, Karen. Her parents took us to the drive-in to see my first PG movie, Bless the Beasts and the Children. The Carpenters sang the title song, and they were my favorite group, with many of their songs touching me deeply. The movie ended with the tragic death of a character I had gotten quite attached to, so I found the whole experience very poignant and it has always stuck with me emotionally.

Here is an excerpt from the song:

Bless the beasts and the children

For in this world they have no voice

They have no choice

Bless the beasts and the children

For the world can never be

The world they see

Light their way

When the darkness surrounds them

Give them love

Let it shine all around them

I realized recently that I think of this song every time I think of a child, especially one with special needs. And because all the emotions of seeing that movie, hearing the song, and being so deeply moved by the music of The Carpenters, I have a very special place in my heart for ANYONE who seems to be in an underdog position.

Although I did not understand how to show compassion to special needs people when I was a child, now that I am a mother of 4 typical children and 1 special needs child, I have a huge amount of that compassion. Compassion is good, of course, but I have read much by parents of special needs kids who say they see their kids as no different from the others, in terms of how the parents treat the kids. Setting boundaries, setting expectations, all those things are still in place with their special needs kids.

I have struggled with figuring out how to set boundaries for my little guy who has Down syndrome. I wonder if it is reasonable to expect someone who is delayed in several developmental areas to understand or be able to practice self-control at age 2. The doctors told us that a child with Down syndrome can learn, and indeed I have seen that in Kepler, but it is very challenging to me to have appropriate expectations for this little guy.

And then the chorus of Bless the Beasts and the Children floats through my mind, and I think, “All I want to do is give him love, and let it shine all around him.” If we surround him with love, perhaps all the rest will take care of itself. In the meantime, I look for wisdom on how to deal with him throwing his spoon and bowl at the end of every meal.

A Mother's Intuition by The Down Syndrome Express

A mother’s intuition is pretty valuable. With my first four children, I learned more about listening to myself as I experienced all kinds of different situations with the kids. When my little guy was born, I had to learn anew the importance of listening to intuition, but this time, with the added complications that Down syndrome brought to the table.

When he was diagnosed with an ear infection at six months, I did what I had done for my older children, who had almost no ear infections. I treated his infection homeopathically. However, even though I had heard that children with DS have small Eustachian tubes, I didn’t really see how that might impact my choice. Well, when I went back for the re-check, the infection was not gone, and the doctor geared up to order a stronger antibiotic. I told her I had not given the antibiotic she first prescribed. She asked me why I had come to her in the first place if I wasn’t going to do what she recommended. I told her honestly that I just wanted to know if he had an ear infection. But, since my homeopathic treatment had not worked, I was completely willing to give him the antibiotic. The infection cleared up, but we did eventually go the “tubes” route as he was having trouble with fluid in his ears, and I was easily convinced that his speech and language development might be significantly impacted if he could not hear clearly. The tubes were an excellent choice, looking back and seeing how his ears have been since that time.

More recently, one of my older children got a bad cold, and although my little one fought it off for quite awhile, it wasn’t too long before he woke me up with that croupy cough. We have an arrangement whereby anytime croup crops up, we administer oral steroids and take him to the doctor the next day to make sure his breathing is ok. I chose not to take him this time, after faithfully driving him the 17 miles to the office the other 4 times he has had croup, only to be told that his breathing was fine. So now it was the weekend and he didn’t seem to be getting over it as normal. By Sunday night, I knew he needed to be seen by the doc, so I took him in on Monday morning. Turns out he had pneumonia. Even while I was second-guessing myself for not bringing him to the doctor on Friday, my gracious doctor said, “You should always trust your gut. If you had brought him in on Friday, this probably wouldn’t have even shown up.”

I don’t always make the right decisions. There have been some things I’ve missed with my kids at different times, but I’m sure there is something to be said for that certainty that comes sometimes when I am trying to decide how best to address a situation.

The Down Syndrome Express-- Intro

My friend, Erica, invited me to write something about my life as a mother of five, for her blog at the Baby Boutique. She asked for something that other moms might relate to, or might identify with.

We have five children. We had four for quite awhile, nearly six years, before our little buddy was on the way. I was so nervous about being pregnant at my advanced age of 43. I wasn’t worried about anything in particular, just the whole idea of giving birth again, even though I had had four wonderful births with the older children. I think my biggest fear was that I would have an even bigger baby this time. Our daughter, our fourth child, was 11 pounds, 7 ounces. I couldn’t imagine giving birth to a bigger baby than 11 ½ pounds!

My due date was January 9. I was hoping for December 31 since that is my husband’s birthday and I thought that would be fun, to have two birthdays on the same day. I also secretly felt that if the baby was born before the beginning of the new year, everything was going to be all right with him and the birth.

During my pregnancy, my baby had had the hiccups every single day and the baby’s movements had been so much more noticeable than in earlier pregnancies. I noticed the difference but did not worry that they meant any particular thing.

I wanted a water birth with this baby because my two sisters had had their babies this way when I was about six months through this pregnancy. Their stories were so wonderful that I decided to pursue this option for birth. The local hospitals offered laboring tubs but explicitly stated that giving birth in the water was prohibited. My doctor was of the “ask forgiveness, not permission” mentality, but I knew I would be very uncomfortable if there were nurses tapping their croc-shod toes at me. Eventually, I decided I wasn’t going to give birth in the hospital and met my lay midwife less than one month before I was to give birth.

My husband and I felt an immediate connection with our midwife and moved forward confidently with this plan.

On New Years Eve, clearly the baby was not going to be arriving before the end of the year. We spent our evening with our little family, looking back at the year previous and looking ahead to what was coming in the new year. We watched a DVD by John Eldredge which taught that Jesus is the hero of the story and we are part of his story. Midnight came and went and I tried to tell myself that my little superstition had nothing to do with reality.

One week early, January 2, I spent six hours laboring and giving birth to our little guy, our smallest baby by far at 8 lb 12 oz. I have thanked God many times for the wonderful labor and birth I enjoyed. Thanked him for the fact that our children got to meet the baby and hold him minutes after he was born. It all came together eventually as an amazing example of the grace and providence of God, but . . . pretty much as soon as I had the chance to hold the baby, I could see that he looked like he had Down syndrome. At that point, I knew nothing about Down syndrome, and was pretty sure that I would not be a good mother to a child with special needs. I knew nothing, and I didn’t see myself as particularly compassionate or filled with whatever genes all “those” other mothers had who mothered special children so well.

We spent the first night at home, but needed to visit the pediatrician the next day due to the fact that the baby’s color was indicative of not enough oxygen in his blood. Directly from the pediatrician’s office, we traveled by ambulance to the hospital where we spent the next seven days in the NICU. It was during this time that the diagnosis of Down syndrome was confirmed through a chromosomal test.

What a hard time that was, as we were separated from our other children, dealing with recovering from childbirth, dealing with our own emotions, and learning everything we could about Down syndrome. But who could ask for better doctors or nurses? Who could imagine the level of care we received from the hospital? Who could ask for more than my mother, sisters, and brother-in-law gave to help out with the kids? How could we have imagined what kindness would be poured out to us from friends from church, and friends and acquaintances from the previous summer’s swim team? In short, truly it was Amazing Grace.

I have an indelible memory of gazing at my brand new baby as he lay in my arms and knowing almost instinctively that he had been born with Down syndrome even though I had no conscious understanding of how I knew this to be true.

But the overarching memory of that time was that Amazing Grace. The music that was playing when the baby was born was the CD Dwell. The words stick with me:

Dwell in the midst of us

Come and dwell in this place

Dwell in the midst of us

Come and have your way.

Dwell in the midst of us

Wipe all the tears from our faces

Dwell in the midst of us

You can have your way.

Not our will, but yours be done

Come and change us

Not our will, but yours be done,

Come sustain us.

And he has changed us. And he always sustains us. And our little boy is an incredible blessing that we could not have imagined. There are still days when my mind does the math and remembers how old we will be when our little guy is a grown man, but we believe that God will be with us and with him every day of his life. Oh, and if you ask my son, I’m pretty sure he’d categorize me as quite a good mom to him. Amazing Grace.