Tuesday, November 16, 2010

Because I Really Have To...

I couldn't let Angela's plaintive post stand alone.

I've really had to hold myself off the blog this month...I kinda got on a roll last month, but because of how I set this month's project up, I corralled myself off for the month...I have a list for the first of December...and I may have to start writing them and saving them so I don't forget...but I really had to piggy back on this one.

I have said that I nipped the grieving process off pretty quickly, but that I revisited it at different times over and over...I have said that parenting is tricky and that "good" parents and "bad" parents are not so cut and dried...and after putting in Cara's post, and asking her some follow up questions, I have started really asking myself if the experiences that we have had in the past with people with special needs colored our own reactions when we were given our Extra Stuff? In mulling it over the last couple of weeks, I really think so...and additionally, what else did we go through at various junctures that could have short-circuited the "dealing" process? Also, do we have other children and how do they compare in age and how did they fall in the birth order? Not because of the actual birth order having an impact on them, but how the comparisons fall with their siblings...


Past experiences-

Cara said that she had faced the possibility of Downs with one of her older children and had some very positive experiences with a child in a Sunday School class they taught at church...

I had volunteered and worked with children and young adults with Downs...but they had been severely and profoundly involved, in a special school that only dealt with kids who were not independent on, really, any level...there had never been a "high functioning" child with Downs in my past.

The only quasi hopeful experience I had with a child with Downs was a little boy...I think he was 10 ish. He had no speech and his mother hired me to give him private "swim lessons". All she wanted me to do was to take his panic of the water down a couple of ticks down from terror. I was in the BEST shape of my life, I was running, swimming, biking, and doing weights...and I hurt SO BADLY after teaching him swimming lessons...holding him in the water securely, to give him a certain measure of awareness that he was safe, and yet trying to help him feel a measure of independence, and he was panicking and flailing...I have never taken so much medicine JUST for sore muscles...For the record, after 1o weeks, he would willingly get into the water and stand. AND I HAVE NEVER BEEN PROUDER!! :)

So when I was told my child had Down Syndrome, the only experiences had been, while positive, certainly not encouraging for personal independence...

Other possible short-circuiting experiences-

In my personal experience, the Down Syndrome takes a back seat to medical crises...When I had to deal with my baby having open heart surgery and then being diagnosed and followed for a pre-cancerous condition all within 5 months...again, the Downs just wasn't as important...then, when she finally presented it was with a cancer that had a less than 30% survival if you were typical...and better than 98% with Downs...that certainly improves the appreciation of the Downs, let me just tell you! :)

And so now that the medical panic is subsiding, the Down Syndrome is taking more of a center stage...


If your child with Downs (or any special needs) is an only child, or the baby of the family, there is no everyday "Reality Check".

I can say this, because Elise was the "baby" for 4 years and until Amelia came along, the impact of the Downs was not an every day comparison. But when I look at my eight year old, and my 20 month old is more a peer than my 4 year old...the depression comes a lot quicker. And when her younger siblings start asking why she can't talk "right" or why she acts "funny" the fact that things are not as they "should" be gets thrown into your face almost hourly.


Also, when your baby is a baby, the gap of where they are and where they would've been can only be so wide. When your baby is 1 year, and their behavioral age is 7 months, it's not that huge of a difference. But when you are potty training your 5 (and then 6) year old and they are functionally 2, the gap abruptly gets huge. And when you realize that your child will not be able to cram into the regular diaper sizes for much longer, the pressure grows.

And so, I would like to extend a public hug to Angela. There are so many factors in parenting. There are even more in parenting kids with special needs. And every child and life combination is different. And I would like to call out any parent with kids with special needs if they say that they dealt with their issues immediately and never had to "Deal" with anything again. Because I sincerely doubt it. In my experience the dealing with the new reality is cyclical. I believe that most parents revisit their acceptance over and over and there are days or moments or stages of depression, melancholy, stress, or just accepting the "stuck-ness".

And so, in the continued spirit of the Thanksgiving project, Angela, YOU ARE NOT ALONE. Honest. And you are probably not even so much of a minority as you think...and if you are...then almost my entire circle of parent peers is the entire minority. Really. :) So, rest assured that you will get un-stuck. And that you will probably get stuck again. And that is really okay and perfectly normal. God will hold your hand, whenever you need it. Friends, too. And that, Ladies and Gentlemen, is the true bonus of having kids that aren't quite normal. Or at least, that's my favorite part!!


  1. That's a great point about how one's past experiences affect the stages of acceptance. I really had very little experience with special needs, and it was something I really just ignored. I *so* don't feel that way now, and that is one positive thing that has come from all of this.
    Thanks so much for letting me share!

  2. Great points all. Everyone has to come to it their own way, in their own time. I think because I am a social worker who works with severely mentally ill adults (all of whom were perfectly "normal" when born) I had already formed a philosophy and perspective about how we are all challenged in our own way and the word "normal" is really almost a ridiculous word in my life experience. There are so many hurdles beyond developmental ones that can be far more challenging than a child with DS in my world. Kind of like the medical issues for Tiffany. So, I was somewhat prepared and even then I still have some (rather romanticized) wistful thoughts about all of the shoulds which I shake off as soon as possible. Who says what a child should be? But as you point out, our image of what a child should be is shaped by many things. I find people with other kids often challenged in that way - comparing is dangerous. But doesn't that happen even with "typical" sibs? One is shy and one is gregarious, one cooperative, one is a screaming banshee?
    Angela- hugs, come by and see my 11 year old when you fear the future. Your child is exactly as they were meant to be and perfectly unique and beautiful- all of your children are! And you too!