Acceptance, Once Again

It’s time to come clean: I haven’t been all that content, or happy, or joyous lately.  Chalk it up to the kids being home all day downstairs, while I try to work in “peace” upstairs, and hope and pray the new sitter is OK on her own.

The result: It’ s been a long grueling summer, and there’s a long way to go yet.  And, oh yea, I’ve been sort of depressed, like weeping on my sleeve, “oh poor me”, “why God why” depressed.

Then I came back to myself and figured a few things out.  My depression was the cause of my guilt being cleansed out and another level of acceptance taking it’s place.

I don’t want you to get this wrong: I love my kids.  But the temptation was too great: What if they were typical, and I thought on it for a second, and Jesus, the pain was crushing.  Then I spiraled into despair.  Why can’t Zoe just say what she wants? Why can’t I understand Amelia? Why can’t this just be easier – NOT easy, just easier?

You know what I can’t stand?  I can’t stand when we take the kids somewhere and after that, all I get is, “Man you guys have your hands full!”, “Wow, how do you do it?”, and “Are you ok today? I see what it takes to raise those kids?”  That makes me feel like my kids are horrible.  I know that’s not the spirit or intention, but it does feel that way.  Then that leads to, “Well, they’re not that far behind, so it must be my crap ass parenting skills.”  And that’s an easy sell for me, because in addition to being a woman, an Italian, raised Catholic, and being a working mom, my natural acumen for guilt is further amped by the fact that before I met Chris, I did not want to have kids.  Babysitting my way through high school along with already having nephews & nieces by then cured me of thinking kids were anything but mostly a challenge. Then I dang went and fell in love, and the rest is history.

But here on this Christian path, or really, on any Godly path I’ve discovered, guilt is only for the bad things you’ve actually and mostly intentionally done.  Guilt is not for “I tried my best and failed” nor for “my kids are not perfect”.  And even real guilt is disolvable if you’re a real Christian.

Once I washed away my guilt (and it took all those tears), new tears came, the tears of “as good as is it gets”.  THAT is a whole level of acceptance all unto itself.

Then, yesterday, in the sermon, my pastor mentioned my child repeating the words and action, verbatim, to “Ice Age 3“.  For him, it was a blessing, and that opened my eyes.  As a parent, it’s just that darn echolalia.  For him, it was her ability to memorize, to entertain, to throw herself unflinchingly into performance.  At that, more tears fell (hopefully we’re done with them), but this time they were tears of peace.  My kids are what they are, and they are good. God made them perfectly, and I get that…

…until the next time I don’t.

Do you struggle with your child’s struggles?  Even if he or she is not disabled, is a consistent poor showing at something cause for pain?  And is guilt easier than acceptance?  How do you cope with it – I could really use some pointers!

Image: djcodrin / FreeDigitalPhotos.net

21 Things My Daughter Taught Me

Being the parent of a child with Down syndrome can be difficult and heart-breaking but it also can be a life-changing experience – for the better. In honor of Down syndrome day, here is a list of 21 things Amelia has taught me:

1. that I can be loved unconditionally
2. how to love unconditionally
3. laughter is the best medicine
4. how to find beauty in the mundane
5. how to appreciate the littlest things
6. that I am truly blessed
7. God answers prayers
8. don’t make a mountain out of a molehill
9. patience
10. acceptance
11. gratitude
12. laughter is the easiest gift in the world
13. forget the small problems
14. and trust God for the big ones
15. dancing is always fun
16. It’s not a puddle, it’s  a miniature ecosystem
17. rocks are beautiful
18. there is wonder in everything. EVERYTHING.
19. children have amazingly huge and forgiving hearts
20. life is a miracle
21. enjoy the moment and don’t take a single one of them for granted

Life of a special needs parent: Proceed/Stumble/Learn/Proceed…

So, yesterday was a “crying in the shower” kind of day.

I’m overwhelmed, overwhelmed, overwhelmed.

What’s funny is it’s not my work/workload, nor my novel that’s overwhelming.

It’s these dumb awful circumstances that I feel powerful against, kids that I’m losing control over, and faith that I’m AGAIN battling with (although I think that last one is resolved by now).

I keep hoping Jo Frost will show up at the door, going, “I just read your blog, yes?  And I know just what to do.  I have some chart tools, and a foolproof potty training techniques for LD children. Shall we get to work then?”

And then maybe the Dog Whisperer will come a few minutes later and get Helo to stop eating EVERYTHING IN SITE.

I keep hoping, too, that the bell will ring and some angel will have hired a housekeeping service for me to get the sticky off, well, EVERYTHING.

Sure, and maybe Santa will show up and bring me a 27″ iMac, yuck yuck yuck…

Last night, I was SO tired by 7PM that I could barely finish the 100 tasks that need to be done at night, every night. I spent a long, difficult half hour with Amelia and her homework, but it was not until my shower that I realized that “I’m doing it again”.  I have still not completely accepted that there are things that will take Amelia longer…a lot longer, maybe months or years…than other kids, and maybe there are even some things she will never grasp (although I hope not).  Maybe homework is more about routine than ABSOLUTELY getting it, but I still feel like I should try.

With Zoe, on the other hand, I have to move past baby-steps, like redirection.  She is 4 now and growing tall and strong, and I cannot be carrying her here and there. She needs to learn about unpleasant consequences, even if she doesn’t fully grasp something.  And while I still am not good or comfortable or get a great response from spanking, I can force her into a cornered time out, holding her still for a short while.  No one gets hurt and, God willing, she gets that it’s a punishment.

I have a to do the size of Montana for my Christmas week off, but maybe I’ll just do a little of it.  Maybe what I’ll do most is SLEEP…

Image: birdonarock / FreeDigitalPhotos.net

For My Girls..

Oddly enough, this is a Pantene commercial and, even more oddly, that’s the brand I’ve been using for years. AND even more oddly, when I think of Zoe, I think of music and I think of her playing the violin.  (No pressure Zoe, I can see you in many, many different roles when you grow up, whatever you want.)

“Why do you have to be like the others?” Words I’ve lived by my whole life.

Enjoy.

Happy Thanksgiving from Mom-Blog!

Hi everyone, just checking in to wish you a Happy Thanksgiving!

I’m feeling so good about this year and I spent my blessedly late morning in bed list giving thanks to God for a long list and praying for a few in need.

One of the things I realized this year is how much I have.  Even when Chris lost his job, and I later got 2 paycuts, it still was incredibly better than most people have it.  Did you know that if you have one house and 2 jobs you are richer than 95% of the planet?

I finally got that message this year and learned to be grateful for my house rather than grumbling (although I do slip from time to time).  My property and home in a third world country would house more than 100 people, and I know it.

Recently, I posted about Reece’s Rainbow, an organization that touches my heart because it tries to help children with Down sydrome who have no families to get adopted.

Can you imagine, having no family when you need heart surgery?  No family to provide you early intervention that could literally change your life for the better?  No family to hold you and comfort you when things suck?

I can’t.

So if you are grateful for that roof over your head, that computer you now have access to, the food in your belly, and anything else you have that others don’t – even if it’s substantially less than what you had in the past, please check out my friend CJ’s site.

CJ has a heart bigger than anyone I know, really.  She loves children with Down syndrome so much that adopting a child of her own was not enough.  She is trying to raise funds for Melissa, and to quote CJ,

“Melissa is the T21 Traveling Afghan Angel and it’s our job to help her get adopted. Yes, that means you.”

There are many ways to help: donation funds OR items,sponsors, spreading the word, prayer, or of course, considering adoption.

And IF you are near Appleton, WI, please try to attend her fundraiser:

When: December 16, 2009 6pm to 8pm

Where: Harmony Cafe:
233 E. College Avenue
Appleton, Wisconsin 54911
That’s it. I’m grateful for my family, my home, for the world we live in that a special needs child does not have to be locked away for life, and that you and me can do that for special kids around the world. I’m thankful for my friends, my home, my work.  I’m thankful for CJ, who inspires me to DO MORE.

And I’m so very thankful for you, dear readers!  Mom Blog maybe would not be here anymore if it were not for you, but I love you all and I’m so honored you are here!

love, peace & happy thanksgiving, even if you don’t celebrate!

g

Raising a Child with Down Syndrome

Yesterday I read “Down Syndrome Births Are Down in U.S.” at ABC News, which talks about the effects of the statistic that 80% of pregnant women who take the amnio and discover that their fetus has Down syndrome choose to terminate the pregnancy. The result is a huge decrease in births of babies with Down syndrome, which in turn, will affect funding for research on this syndrome and, perhaps, eventually affect laws.

There were a few things I was shocked by in reading this:

• Fear. People are actually afraid of having a baby with Down syndrome.  The mother in the article literally preferred her child have a heart defect rather than Down syndrome.  This makes me so sad!  I can tell you this: “fear” is tied to not understanding Down syndrome and not knowing people who have an extra chromosone, in addition to going by outmoded data.  It’s been decades since people with Down syndrome are typically committed to mental health institutions.
• Rush. Of course, aborting a fetus means you have a time consideration and  generally, you have a small window of time to decide.  I recall so clearly the emphasis made on genetic counseling to decide whether or not to have an amnio.  Genetic counseling teaches you the medical issues about fetuses with the conditions they can test for as well as the test.  What they don’t tell you is what those conditions mean; I’m gathering from the article that doctors often do not paint an optimistic picture of caring for and raising a child with this disability.

I’m writing this article to clear these issues up.

HEALTH
First of all, there is nothing more to fear with a child with Down syndrome* than any other child, excepting  if your child has a heart defect. This is fairly typical, however, keep in mind that the heart is one of the organs in the body that quite a lot is known about about and quite a lot can be done surgically and otherwise to fix problems.

Shortly after Amelia was born, we discovered that she had a tiny hole in her heart. In fact, her heart grew as the hole – the size of a pinpoint – grew, and in another area where she had issues, the growth of her heart acted as a kind of bandage over the hole.  She has not needed surgery or had any issues, although we did need to monitor her as a child and every 2 years she gets a sonogram.  Now, we do also have issues with sinuses, there is a slightly elevated chance of  leukemia and thyroid issues, and Amelia did not have hypotonia.  Still, children are not a guarantee and I just read that kids who have leukemia and Down syndrome have a better survival rate than kids who don’t have Down syndrome. Wow, so don’t make your chicken sick before they hatch…

ABILITIES & DISABILITIES
As you know, Amelia has learning disabilities.  While she is not academically up to the level of a typically developing 6 year old, she is not so far  behind that I can’t see a good future for her. I fully expect her to go to high school, and possibly, college.  More and more colleges are now trying to set up programs to help these youths become fully integrated students and members of society. I have no doubt that she will live on her own and be gainfully employed doing something she loves.  She may even marry!

Sure, we have to work a little harder and I may have to fight a bit more, and on any given day, the paperwork for my kids can be stunning.  But this is just part of being a good parent.  You don’t know what your kids will deal with, but for sure, they will deal with something and you may have to put on your boxing gloves and show up at the ring.

What I’ve gained: a beautiful, happy, infectiously ecstatic child, who loves and appreciate people and nature, who screams “mommy!” with peels of glee whenever she sees me, patience, advanced track on spirituality, gratitude, a better marriage.. really, I could go on and on.  I am glad that I never chose to abort that pregancy and I think many others would feel the same if they learned more about Down syndrome.  Or maybe I’m just a hopeless optimist, lol!

Now that you know a little, I encourage you to learn more, particularly if you know anyone getting an amnio or CVS, or anyone who has a fetus or child with this condition, or comment me with any questions, or ask a family who has a member with Down syndrome, or get out there and meet some of these wonderful people!  Here is a list of resources:

• Down Syndrome Myths & Truth (scroll down under Sarah Palin press release)
• Why The Abortion Rate for those with Down Syndrome is over 90%: Kristy at the wonderful Mosaic Moments shares her thoughts and argues for keeping the pregnancy.
• Down syndrome “typical” symptoms from WebMD.  Remember, every child is unique so these are not “guaranteed”.
• National Down Syndrome Congress site: we are ALL more alike than different!
• National Down Syndrome Society
• East Penn Down Syndrome Center for those located in and near Lehigh Valley and Allentown, PA

Share your resources, stories and questions in comments!

*Note that Amelia has Mosaic Down syndrome, which is very rare and slightly different, in which the continuum of affected health, physical, and mental issues may be somewhat to the higher end of functioning.

How to Talk to the Parent of a Special Needs Child

Yesterday I went to a church I’ve been courting and during the greeting time, I was speaking to a couple about my children. The wife asked what their special needs were, and I described them.

Their reaction was odd: they were sorry.  I was caught off-guard, I admit, because I’ve never had this reaction.  These were most likely college educated professionals, and friendly Christians as well, which confounded me even more.  I wondered why it bothered me so much and during the service I realized why.  “I’m sorry” is what you’d say or how you’d react to a parent who’s lost their child.

I haven’t lost them.  Sure, it didn’t turn out like I expected, but what parent can’t say that?

I saw from this experience how much I’ve grown in almost 7 years.  My reaction then would have been to commiserate or take on the “poor me” victim stance.  A few years later, I would have been downright angry.  Now, I feel like this is an opportunity to teach others.  This couple wasn’t bad or wrong or condescending.  It’s just that no one has taught them how to act in this uncomfortable (for them) situation.

Readers, I’m not saying that my journey as a parent hasn’t been rough or even pure hell at times. I’m sure parenting in general is like that, but children, I believe, are a treasure, and mine, well, I wouldn’t trade them for the world.

So if you do not have special needs children and you meet someone who does, smile and show them that they are just as blessed with their children as you are.  I’m not sorry about my kids, and you shouldn’t be either. God made them as they are meant to be, and they are a perfect fit for my husband and I.

That’s it!  Don’t say things like “oh children with Down syndrome are so sweet” or “how do you communicate with your daughter who has autism”? Those are stereotypes and don’t always apply.  If you met me, you could be honest and say, “What would you tell a parent who’s never met a child with special needs?”  You can ask how old they are, are they in school, and what they are like.  You can ask how they are doing.

In short, treat us like you would any other parents.  I firmly believe that we each get the children we need, and our children get the parents they need, and that children are always a blessing, even when you can’t see it.

For additional reading, check out “What to Say When Your Friend’s Baby has Down Syndrome“, should you come across this situation for a new baby.

Thank you, Glee!

It may be no surprise to you that I’m a big fan of  “Glee“. BIG. HUGE.

Well, I just watched last night’s episode, “Wheels“.

First you should know that I’ve been wondering where the hell all the shows have gone with people with Down syndrome in them. I have seen some commercials which is a more recent, positive development, but it’s been quite a while since I’ve seen a show where anyone had Down syndrome and was beginning to wonder why in that “I need to write a letter” kind of way.

Then came “Wheels”.  I’ll admit, that when the girl – Becky – with Down syndrome appeared, I was nervous.  “Glee” is about as irreverent as you can get and I honestly wondered, as I watched an entire episode plotted around kids with disabilities, if this was PC and if I should even be watching it.

Then I got OVER MYSELF.

Because being “PC” is a load of crap and, in this episode, the writers hit a nail on the head.  I stayed with it, treading nervously through the Sue Sylvester pieces, and was rewarded with an episode that was funny, irreverent, empowering, and not a bit PC.  It treated people with disabilities with dignity and with laughter – in short, like they were people without disabilities.  And you saw the irony of being “PC” – how in the long run, it can be condescending and demeaning.

Good job, writers!  I highly recommend this show if you like irreverent (yes, I  need a thesaurus ok??) comedY, music, and smart, witty writing.

Do you allow the school to photograph your special needs kid?

At the beginning of the school year, we had to answer some questions about whether or not we’d allow our kids to be photographed.  I had no problem with pictures in the school, but this was the first time I thought about pictures being used in the paper.  I put “no” to that question, as I did now want Amelia to be used this way.  (i.e., “Local girl with Down syndrome attends charter school”.)

On Friday, I got a call from the school. Another school had to back out of a field trip to the Wildlands Conservancy and on Thursday morning, they offered our school the program, since it had already been booked.  Seven Gen said yes and sent home letters to dress the kids warm so they could spend the day out at the Wildlands.  Amelia had a fantastic time, her teacher said she was “really in her element”.

The school contacted me that afternoon, since a local paper took a photo of her and wanted to publish it with an article.  The school  told me her face was not visible and that it was a great photo, so I agreed and this week, Amelia’s picture will be in the East Penn Press. (Sorry, can’t find  a website!) There she is, my little scientist, who can’t resist a puddle or a rock if she can examine it!

If you have a special needs child, do you allow photographs of him or her taken by the school, put on their website, or given to the local press?  Why or why not? Share your stories.