my thoughts on the word retarded (and lame and gay)

So, I have never liked to hear people call other people retarded. It is an unkind word almost never used in context. Yet, people from all walks of life use it to describe people or situations that they think are anything from unfair to ridiculous.

Among those in the special needs community, there are very strong feelings about this word. Because Down syndrome and other syndromes are associated with mental impairment, parents get pretty upset and outraged when people throw around the world retarded. No one wants their kid to be called names and certainly not 'retarded'.

But, I don't necessarily assume that people hear the word retarded and think of Lauren or anyone else like Lauren. And I, for one, don't want them to. I would never want anyone to hear the word retarded and automatically think of Down syndrome. But honestly, i don't think that people do. Most people don't really know what the word means anyway, so I can't expect them to to know that much about DS or mental impairment.

Yes, the word gets used inappropriately and I think people should be more careful about what they say.

But what about the word lame?Or Gay? If we are to get on our high-horse about people using the word retarded, shouldn't we also be careful not you use the words, lame and gay? Do people with unusable limbs or homosexuals deserve for words describing their 'condition' to be used inappropriately. Of course not.

All I am trying to say is that if we are going to be so careful about language, then let's expand it to other words, too. Not just the ones that personally affect us.

Not much time to post today.

It was a full, busy Saturday. I had class today from 9-2:30 (was supposed to go until 5, so getting out early was a great surprise) because the kids had parties to attend.

The first was Miss Mary's Halloween extravaganza! Mary is a friend of ours and Gabe's former preschool teacher. She has an amazing home and pole barn and hosts the parties there every year. She provides moon walks, hay rides, drinks, food and asks that everyone who comes to bring a dish to pass and candy to hand out. We sit on hay stacks which have been placed to form a path through the pole barn and all of the little one's Trick or Treat.

Gabe was a Tiger
Lauren was a Princess
(pictures will be forth coming)

On the way home from that party, Gabe had a party to attend for out next door neighbor. This one was held at McDonalds and Gabe asked me to stay as well. So, i hung out with the grownups and watched Gabe run around for awhile. Snuck in a few fries, too.

After getting home from that we had to hide Gabe's Halloween candy stash from Dad (Chaz doesn't read my blog but don't tell him that the candy is in the drawer of Gabe's bed) and get the youngest kids ready for bed.

And that is where they now are. I feel like I got alot done today but the house is a mess so I already know what i'll be doing tomorrow after church tomorrow.

ta ta for now!

the love that is Lauren

It seems like ever since Lauren was born, people have really wanted to see her and be around her. Friends delight in her, strangers notice her and say sweet things and acquaintances just want to get a glimpse of her from time to time. They all want their "Lauren fix".

That's just how it is with her. What are ya gonna do?

Lauren seems extra special to me, too. It may or may not have anything to do with that extra chromosome. Maybe it has something to do with the anxiety I went through while pregnant with her which was so entirely preempted by the joy of her birth. Her happy smiles which make her eyes shine have something to do with it. Her gentle nature...that is becoming less gentle and more demanding, is just nice to be around.

Yes, people with Down syndrome have been stereotyped as so sweet and gentle. There are worse things to be. Sure, she's moody and demanding and fussy at times (yes, really) but man, that almost seems like an aside when compared to what joy she brings. I call her my little ray of sunshine.

She's asleep right now and the boys are on the top bunk doing an animal search book. I'd like to find the person who started that trend and pop em in the face. Why oh why must I be subjected to these books? They are so dear to Gabe and he likes nothing more than to have someone sit with him while he finds the 45 emperor penguins which are cleverly intermixed with the 71 king penguins and 112 seagulls. What a cruel world it can be :) I will have to be sure to tell Davrin how much I appreciate him taking the time to do this book with him.

Goodbye for now!

Long time no see

I've failed the 21 for 31 challenge, miserably. I've logged on and wondered what I had to say that wasn't depressing or negative and couldn't find anything so just moved on to other sites that were more interesting and uplifting.

The past couple of weeks have been a bit more trying than usual. I have 5 children and i've yet to have a day or week when 1 of them isn't going through something - an illness, or a hissy-fit or some other intrapersonal experience that is not compatible with my life.

Take for instance, THIS MORNING. After rousing from a nice codeine-induced sleep, I woke up to Lauren's jibber jabber and the alarm clock. It was time to get moving and get things going. After grabbing some clean clothes for Gabe, I bring LoLo downstairs and see if Gabe would like some cereal for breakfast. Yes....okay, we're off to a good start.

Gabe is 5 and much more strong-willed than I. Fast forward to the crucial drop-off at Meadow Montessori. By 7:40 I have 6 children in my van - 2 of my own (Gabe and Lauren) and 4 that I drive. Gabe's desire was to get out of the van first...or at least not last. But this didn't happen so he was grumpy. Then, he didn't want to take his coat. Then the 'headmistress' of the school cam to try and help me get him going but gave up and told me I was holding up traffic and needed to pull up. I did get Gabe out of the van,,,,but that is as far as we got. After 20 long minutes of arguing and threats of punishement, Gabe, Lauren and I headed back home.

So, Gabe didn't go to school today...and he's grounded from "media" for a week.

Following this was the experience of rousing and delivergin Ada to her school. She was teary-eyed when I dropped her off but she went. Success, of sorts. ( I did call later and found out that she was fine...taking part in stuff at school.)

Next was the issue of taking Lauren to Baby Hugs. I have (had) a paper due for my consulting class and knew that I had to get it done today!

She cried when I left her but I let them know that I would call at 11:30 and that if she wasn't doing well, I would come get her before nap time.

Anyway,,, I know this is all pretty boring stuff. But, it's my life. My friend Pam called around noon and I was so upset that I couldn't talk to her or tell her how badly I felt about...about everything in my life. I worked on my paper and sniffled for the next hour. Gosh, it was great; you should have been there!

The day ended okay and now, finally, i'm fulfilling my desire to post on my blog.

that's it for now

alone yet united

Sometimes, really, I feel so very alone in my journey with Lauren which is odd because I know that i'm not and I know that there are thousands of other parents 'out there' just like me. Or at least, sort of like me.

I read alot, I spend alot of time online and I try to interact with lots of "real" people, too. I reach out to others and sometimes, they reach back to me.

Raising Lauren is not a difficult task. Yes, she has Down syndrome but that is not that hard, at least not anymore. The first year was pretty exhausting but we got things figured out and she has been in really good health for the past 9 months. There are appointments for therapy and the missing hearing aid and my own incessant need to constantly stimulate her. But, in reality, her easy going nature, smooth disposition and adorable smile make her quite delightful. She does not make the demands on me that her 5 year old brother does...not even close!

Back to the loneliness thing. It may just be me, but I find it hard to feel part of the big picture of "the world" or even of the "Down syndrome world" in the way I would like to. I'm either too tired, too broke, too busy or too unconnected. I'm out alot but not really doing things other than driving kids to school, running errands or going to appointments for anyone of my 5 children.

I used to be part of group of mothers who all met at La Leche league. We planned weekly get togethers and outings and it really helped the first years with Gabe feel full, interesting and fulfilling. And, while I've met lots of great people since Lauren was born, I don't have that type of group anymore. And, I wonder if I ever will. Will we be (or have we been ) left out or not invited because of Lo Lo's DS, because of her slower development?

When I go online or read books, such as Road Map to Holland (by Jennifer Graf Groneberg), I get the chance to get plugged in again for awhile. I've learned so much from my online community of friends - we share the trials and joys of our experiences and have a bond forged from common fears, discoveries and chromosomes.

I guess I just wish things were different for awhile. I wish that it wouldn't be that hard to make new friends and I wish that that feeling I get sometimes, that we really are all connected would last and would mean something. And, I wish that I could shake away these lonely feelings that I get sometimes, because I know that my life is meant to be full, interesting and fulfilling. Maybe even happy...not despite what i've been through but because of it.

Daycare dilemna - solved!

Today, Lauren spent 2 hours at the new daycare center, Baby Hugs. All in all she did really well. She did cry but was able to calm down and be soothed by the caregivers. When I picked her up she was outside swinging with some of the other children and was quite happy. They said she did great and she was really happy when i got her home. Such a relief!

I don't need her to be in care much until I start my internship at Monroe High in November. I'm getting my master's in school counseling and will have to complete 600 hours over the course of the next year. So, Lauren will not ever be in daycare more than about 20 hours a week (this last paragraph is meant to relieve any Mommy guilt I always have about having other people care for my child).

During the two hours she was away, I eased the knot in my stomach by vacuuming and shampooing the inside of my car. One of our local car-washes, Mack's, has the best equipment in town. I had a pleasant exchange with Mack after the machine got jammed with quarters (mine) and wouldn't work. He appeared at first, to be a crusty ol' man but was such a sweetheart. He got the machine working, loaded me up with quarters and thanked me for letting him know that the machine wasn't working - rather than going away mad and not returning.

It's been a good day - got lots done at home, too and can't wait for LoLo to wake up so that we can spend some more time together.

One of those days.......

Today I had the chance to visit the building that houses some of Monroe county's special needs children. The kids here are anywhere from 3 - 26 and have a whole multitude of disabilities and challenges. I believe that the kids here are dealing with pretty severe developmental delays which prohibit them from attending regular or school-based special ed classrooms.

I had dropped Ada off at her school which is called the Transition Center and it located right next door to the Ed Center. She had had an appointment with Community Mental Health and after I dropped her off I decided to go visit a couple of people I know who work at the Ed Center.

Anyway, with Lo Lo in hand I walked through the halls of the Ed Center and neither saw nor heard anything reassuring. It wasn't that the teachers weren't doing their jobs or aren't truly good at what they do...they really are. They are so committed and wonderful. There was just such an emphasis on managing behavior and not so much on education.

(I'm realizing as I write this how hard it is to not sound critical of this program -i'm really not. It's just not what I want for Lauren, though I'm sure I'd be grateful for it if this is where she needed to be.)

It just hit me as really sad that kids like Lauren come to a school like this. I don't really even like saying this because I know that all of these children are loved and probably make progress and surprise those who know them.

But still, I don't want Lauren to need a school like this. I want her to attend her neighborhood school and to be a pretty much regular kid. I know that it will take her longer to learn to read, write and do arithmetic but I don't want that to ever stop her from being just a regular student in the classroom.

Sometimes I walk the fine-line of 'realism' VS 'high expectations'. I'm chastised for not having high expectations but also warned not to expect too much. This is not new ground for me, at all. I went through all of this with my first daughter and am very familiar with the concepts of:

second-guessing myself
not wanting to get too excited about progress in case it's just a fluke
not setting my standards too high in case they weren't reachable

etc etc.

I know that Lauren is different; she will progress in different ways and have different abilities than my other children, but I do know that I will always want more for her.
It's just too hard not to:

You too can be the parent of a child with Down Syndrome

I'm letting myself off the hook tonight by posting a link to an agency that specializes in adoption of children with DS. They come from all around the world but all share something in common - that extra 21st chromosome. In some countries that makes them instant orphans and often that means that their physical, emotional and educational needs go unmet.

Until someone gives them a home! I think they are just gorgeous:

http://www.reecesrainbow.com/

TA TA FOR NOW!

Just another day

Today started early and is going to end late. I woke Gabe (5) up at 7:00 so that he could eat and have a few minutes to play before driving him to school. He is a 1st grader at Meadow Montessori school and the school day runs from 8:00-3:30. It's a long day.

After getting him off, I came home to get Lauren and me ready to visit a daycare I'm considering for her.
The visit went really well. The owner is fantastic - really dynamic and loving - a real dynamo really. And, as an added bonus, one of the caregivers for Lauren is a mother who has a little boy with Down Syndrome. That gives me a level of comfort, naturally, for many reasons. She understands the slower pace of Lauren's development and how to celebrate every milestone. It was nice to talk with her and to hear how well her son is doing in his own 1st grade classroom.

Lauren was hurt at another daycare about 2 weeks ago and it was really unsettling. She is okay but it reminded me of how vulnerable little ones are and how upset I get when someone is reckless with one of my kids.

We'll be taking a slow route in getting Lauren adjusted to daycare - I won't need it much until next month when I start my internship at Monroe High school - about 20 hours a week. I think that parts of it will be really good for her (she loves to play and they have a ton of toys), the variety of other children, etc...and I know that it will be hard for her as well. She doesn't like being away from me and it will be a huge adjustment for her. I worry about her and pray that she will not get hurt again, that she will have lots of fun and that she will be a positive influence on everyone she meets. A tall order for a 14-month old, but I have high hopes for Miss LoLo!

Trip to the Zoo

Today we (Chaz, Davrin, Gabe, Lauren and I) traveled to Lansing, Michigan's Potter Park Zoo. Every year at this time, Tomorrow's Child/Michigan SIDS puts on a Memorial Service in honor of the babies lost during pregnancy or infancy. Our son, Gaven, passed away 6 1/2 years ago at the age of 3 months due to SIDS. I like going to this event as it is dedicated just to babies like him and the families who have been through a similar loss. They always show a slide show of the babies, have music, a speaker and then a walk out to the Baby Garden where we have purchased a stone in Gaven's honor.
Here is a shot of Lauren sitting near her "Big" Brother's stone.


It's also so hard to be reminded of what we've lost and what so many other's have also lost. It just doesn't get any easier, either. I don't feel the same raw pain as i once did, but it still hurts and it still surprises me that such a lovely, beautiful member of our family is now gone.

This picture of Gaven was taken just a couple of weeks before he died.



While the boys just want to go to the zoo to have fun and explore, to me it's an important reminder of what our family has endured.





The speaker, Dr. Canine, talked about the 4 R's in grief. I admit that I can't remember but three,
Remembering, Reconciling and Reinvesting

The last, Reinvesting, really resonated with me today. After Gaven passed away, I had so much love and energy leftover; I didn't know what to do with all of the feelings I had for him. I had planned on giving it to him over the course of the next 50 years or so.

Dr. Canine encouraged us to 'reinvest' that love - into our other children, organizations, and helping others. So, that is what I do...I reinvest that love, into Ada, Nolan, Davrin, Gabe, Lauren and to Gaven. I will always love and miss that little boy but without him here, I know that my love is still needed by so many others.

On the way home from Lansing, we stopped at Trader Joe's in Ann Arbor to stock up on snacks and stuff for lunches. My oldest son, Nolan, met us there as he was done visiting his girlfriend, Alex who attends U of M. (Nolan attends college at Central Michigan University - majoring in photography...holla!)
How fun it was to see him amongst the nuts and chips and for his two little brothers and little sister to be so happy to see him. I was so glad he could meet with us - just to reconnect and to remind him that I love him.

That's what it's about - realizing that your love will never run out, no matter how much we give.

Acceptance:

Is acceptance a slippery slope, constantly changing and challenging us or is it a one shot deal? I think it comes in stages - sometimes easier than others.
I'm not happy that Lauren has Down Syndrome but I do accept it in the same way that I accept that Gabe is strong-willed and Ada has bi-polar disorder.

I love Lauren's little peculiarities and the fact that she is unbelievable sweet and good-natured (most of the time). I love it that my radar is now tuned into other kids with Down syndrome; I look for it in all of the faces of the children I meet and am disappointed when all I see is a 'typical' child.

When I was 15 weeks pregnant, I had an amnio done to find out more about this baby I was carrying. When the news came, 2 weeks later, that Lauren had DS, I was more than sad. I was angry, dissappointed and filled with disbelief. How could this be? Why? Matching my feelings were my husband, my family members and the medical community in general. "You can terminate" was the most common reaction and for awhile I thought that that would be for the best.

Fortunately, we saw beyond that and realized that there would be no long term peace with that decision. It still frustrates me that that is even presented as an option, so readily and so openly.

The remainder of my pregnancy was filled with great anxiety and angst. While I knew that Lauren would be brought into the world, I wasn't sure that Chaz and I would be the ones raising her. We decided on adoption and found that there were hundreds of families eagerly awaiting the arrival of a child with Down Syndrome into their lives. What a wonderful and amazing thing. We met some loving people who would have given Lauren an amazing life.

Well, it's a long story and obviously we kept Lauren in our family. I have never looked back or regretted that decision in the least.

but, I'll admit that i've spent alot of time since then convincing myself that things were going to be okay. And, Lauren, in her own unique way has spent more time convincing me that she deserves to be here and that things were going to be more than okay. She is a true delight and a great addition to our unique family.

Developmental Milestones

This is a toughie for alot of people, including me. When our children are born we immediately begin taking care of them and thinking about the days to come. After spending so many hours keeping them safe, fed, dry, warm, content it's natural to begin wondering what is next. Heck, we begin hoping things for them before they are even born; will she be tall and slim? will he be great at math? will she learn to talk early? will they be truly happy?

As days turn into weeks and weeks turn into months, our expectations for them come from all sides. As early as 1 month old, we are looking to see if they've met the few developmental milestones for that age. People constantly ask what they are doing. If we've subscribed, we get a weekly newsletter from babycenter.com, telling us what our baby may be doing this week.

It turns alot of us into milestone maniacs. We want our kids to do things ahead of the curve or at least right on time. If not, there is a sense of letdown - after all, we want our kids to be the best they can be.
When your child has Down Syndrome or any other of the many possible syndromes & conditions that affect development, those milestones take on even more meaning and angst.

I don't think that Lauren will walk by 18 months (the very edge of "normal" development) maybe not until 24 months or later. And yes, that kind of bothers me. Some of my kids have met milestones very early and that is pretty exciting. I guess there is a false sense of pride when our kids do this -- because even though I take my job as mother very seriously and have always provided the proper stimulation for their development, they are still going to do things when they are ready to do them. But still, one of my kids began reading books at 3 at that was very cool and very exciting.

What i'm getting at, in a very round-a-bout way is that my expectations for Lauren are still very high - but they are different than what I have for my other children and what you may have for your 'typically developing' child. I have had to readjust my expectations a bit based on what is typical of kids with DS. The great thing is that she will most likely learn to do everything that is necessary to succeed in life.

Besides, she's always been off the charts in sweetness.

Do you know anyone with Down Syndrome?

Rather than do all of the writing, i'd love it if you would take the time to share your experience with someone with Down Syndrome. Did you grow up with someone with DS? Go to school? Have a neighbor? Teach or coach?
Whatever your story is, please share it here.
Thanks!

How Much is Enough?

When your child has 'special needs' there is an almost constant, lingering worry that you are not doing enough. Granted, all parents worry about this at times, but I find it different with Lauren and Ada. Today I met with a parent from the hearing impaired program and we agreed that, at times, we've both felt like we need to always be working with our children.

Does Lauren get enough time on the floor? Do I sing, talk, read, sign to her enough?Do I give her enough opportunities to feed herself? Is she drinking out of a cup enough? How many times did she walk on the treadmill?

and that is just the beginning.

At the end of the day, as I take stock of what we've accomplished and how that differs from what we hoped to accomplish, all I can do is say "we did okay" and that is enough.
Tomorrow will bring a fresh start on all of these tasks and more.

Ultimately, I believe, Lauren will reach her full potential, not only because of what I do with her but, also, in spite of what I do. As with any child, it will take time and work to bring her abilities to the surface. As long as I spend more time nurturing them than squelching them, she'll probably be okay.

Well, it's been a very long day and I need to rest up for tomorrow!

People First Language

The first order of business is to get us all on the same page linguistically speaking.

People First language is a movement to help improve the representation and acceptance of babies, children and adults with physical, mental or emotional challenges. By stating who they are first and what condition they have, second, it retains their integrity and value.

For Instance: Lauren is a child with Down Syndrome. She is not a "Down Syndrome baby" nor a "Downs Child". She is a CHILD first and she was diagnosed with Down Syndrome.

This may seem petty to you but it bugs the heck out of me (and lots of other people raising children with differences). I know that when people say something like Downs baby that they aren't trying to be insensitive but it would be nice if Lauren and others like her were recognized as children first.

You may be surprised how often you don't use People First language in other areas of your life.

Instead of saying: Did you see the way that ditzy blond cut me off? say instead, "Did you see that woman with blond hair make an irrational choice in switching lanes?

Give it a try - it's easier than you think!

31 for 21 - Down Syndrome Awareness Month

hello family and friends! As the mother of a child with Down Syndrome, i've decided to participate in this month's Blog Challenge - 31 in 21. The idea is for people like me to raise awareness of Down Syndrome (DS) during the month of October.
Up till now I have not been an active Blogger but I hope to share at least 31 mildly interesting posts with you.
This is also your chance to ask questions about Lauren, specifically or DS in general.
Everything you wanted to know about DS but were afraid to ask.

Sooooooooooo...let's get started!