Wednesday, September 22, 2010

Surprising Hurts - Day to Day #3

I enjoyed Sandy's guest post. It managed to say what I've said for years all in one place...very clearly. I appreciated her words...and as usual experienced the thankfulness for hearing many of my thoughts from someone else I don't know very essence repeating the you-are-not-alone refrain.

I came back and dwelled on her words of "don't give advice, unless asked for it"....this is SO true.
Many times I have been surprised by what hurts. Yes, there are some behaviors and words that hurt, and you can't be desperately surprised that they do...but then there are the moments that sneak up and knock you breathless...and the pain is shocking...

Three specific incidents come to mind. (If this was you, please don't be hurt, I just want to be transparent here.)

#1. When we had Elise, and were drowning in our shattering dreams and physical implications of her health....I had a loved one look me in the eyes and ask "Other than the worry, it's not that big of a deal to have a child with special needs. Is it?", no...but the worry was resulting in a stress that was all encompassing, and we were gasping for air. We had just been told that she had a heart murmur, and that it "may or may not correct itself"...but it was a maybe. So, at the time, she was just a baby that needed everything that any other baby needed...and needed nothing else just then. But it felt like I had been slapped. I ended up responding, "No. Other than the worry, it's just the same." Which was true...but that is the most binding factor of being a parent...worrying over your child, whether you are dealing in special needs or not....and the long term implications of a diagnosis can be a brutal worry. Her "practical" response that I am sure was supposed to encourage me in the normalcy of my life made me want to snatch her hair out by the roots...To her credit, she did apologise for it years later...

#2. Again, a few years later, it occurred to us that our will was making a lot of assumptions. Did those chosen to take our children still feel comfortable with the complication that Elise had all these health/behavior issues if something happen to us? Thankfully, when we approached them they responded positively, and we were reassured. But in the throws of these thoughts, someone commented that, I was lucky, because there is no way she could handle it... Again, the attempt was to reassure me, but the back-hand of that comment was that someone would refuse my baby, choose not to love her. That despite her miraculous self, Elise was "too much to handle" for broke my heart.

#3. I am one step from nauseated whenever I realize that I am going to have to go to the grocery with Elise. When she was little, she would happily gnaw on a cereal box...NO one shopped happier than she....nowadays, there may be an emotional meltdown, growling, impulsive throwing or raking of items to the floor, running away...SO many options! More often than not, there is a "complication" to the shopping trip...she is getting better because I refuse to stop going out with her...I cannot give up my life over the educational process...and eventually, we'll get there...but the singularly most infuriating moment of my life as the mother of a child with special needs came after a particularly heinous shopping trip. We had no milk, toilet paper, or cereal...and all the substitutes had been exhausted...there was no more putting off the trip...and Elise spent the entire grocery trip doing a wailing scream/growl...she was exhausted after a day at the time I got to the check out, I had a headache, my shoulder had the weird stress pinch going, and was I beginning to sweat...and a woman approached me with the "I'm going to help you whether you want to or not" look on her face. She walked up to me and told me that her best friend was using this great program with her child to make her behave appropriately...and rattled off the website. I would have resented her, but forgotten the situation if she hadn't followed up with, "You really have to have high expectations for your children's behavior or they will take advantage of you." I considered burning her at the stake for being a witch....and then dancing around while stomping the ashes... It was beyond not helpful. The sheer fact that I was IN the grocery store was evidence of my high expectations...and when someone has hit an all time low is NOT the time to offer behavior advice...concerning typical OR special kids...that's when you hug that mom. If you know them, feel free to bring it up on a day when their child has had a spectacularly good day...otherwise don't even go there. But a prayer on their behalf is NEVER misplaced!

The Day to Day #2 - Hybrid Us/Them

I have lotsa kids. Well, 4. And only one of my kiddies has special needs. The rest of my kids are more or less typical...which, if you have kids, you know that can encompass a REALLY wide range! :)

I have one foot in Very Complex and one foot in Normal. It is a weird place to be. I often find myself answering the questions from my own children about their sister that the outside world also asks. For those who wonder, yes, it is every bit as difficult to answer siblings as friends or strangers. I'll be blunt, it may even be trickier.

(Quickie cheat sheet, in case you don't know us: Gabriel is 12, Elise is 7 (almost 8), Amelia is 4, and Charlotte is 18 months.)

When my other children ask why there is a double standard, I have to answer. I have to explain why their sister is different...and explain it enough that they have working information, but not so much that they tune me out. I have to make it clear that their sister is still their sister, but the levels of ability and necessity are not on a even playing field. I have to meet needs and I have to apply appropriate expectations. I can expect Amelia to get completely dressed, I can expect Elise to struggle with fasteners. I can expect Amelia to follow more complex directions than Elise. I can expect Amelia to know what Elise says better than Gabriel. (We tease that she is bi-lingual. She speaks English and Elise-ese fluently.) I have to intervene more for Elise than my other kids and pray that they won't resent it...I can expect Gabriel to assume all his sisters need intervention, while I can expect Amelia to resent that I make her be more independent and responsible than Elise...because she can. I can expect Charlotte to ply Elise with more requests of aid in stealing snacks because Elise is a willing accomplice where Amelia will mother her, and probably tell her "no".

We've taken the tack like we've handled the "sex" questions. We answer ONLY what they are asking. If you answer any more, then either their eyes glaze over or they have more in their head than they need.

I will say, that we had answered all of Gabriel's questions about Elise, but when we got pregnant with Amelia, he was 7. When we told him that she was going to be a girl too, he responded that "Ah, man!" He wanted a boy cause they would walk and talk sooner..."girls take FOREVER!" After I picked myself up off the floor from giggling, I told him that it was just because Elise had Down Syndrome, and not every girl takes 2 and 1/2 years to walk! He said that is wasn't that bad then. :) I just thought it was cool that he thought she was normal...and loved her as is.

The older she's gotten, the more complex his questions have gotten. But the acceptance hasn't changed much...for which I am thankful.

Amelia on the other hand has a more difficult seat. She is 4 years younger and has grown and developed normally and in some ways precociously. She is a tall 4 year old to boot. So, they are almost the same size and have the same interests. Amelia is more coordinated and has better speech. She is both more clear and more understandable and uses more complex language. She also grasps more complex subjects. Recently she has really come to understand the unfairness of the expectations placed on her and those placed on Elise...she doesn't like that she has more responsibilities and expectations. But we cannot change this, or we will be doing her a disservice.

I find myself tearing up over the fact that Amelia can put on her Polly Pockets clothes, but Elise cannot...but I console myself over the fact that Amelia is always happy to help her...

I wonder sometimes if God made my kids "nurturers" by nature or if they have grown that way by having Elise in their lives. I'm thankful either way.

I wonder sometimes if I am "special needs parent" or a "typical parent" and I like to think I am a hybrid. I like to think that I can understand better what people on the outside wonder...and what they need to ask...but because I love my Elise, I know how I wish they would respond...I guess we'll see if this ends up being a blessing or curse...Nah, I guess I don't need to wait, it's a blessing...I just hope it ends up being a blessing to others, too...I don't need to hold too tightly to God's gifts!

Guest Blogger - Sandy - Dream New

I am so excited that I can't hardly stand it! Our first Guest Blogger!! Please welcome with me:

Sandy Van Orden:

"Our son was 4 months old when I noticed when he was different.

He ate like any other baby. He slept like any other baby. He cried....well, his cry was unusual. I know now he was having seizures, but it took three months to figure that out. And by the end of those three months, my husband and I were sleeping on a cot in a hospital, next to our chubby, little seven-month-old strapped to a bed. And it was that uncomfortable, unfamiliar, and undesirable cot that would become a metaphor for the news we would receive about our son's challenges for the future.

Fast forward through seven l-o-n-g years of news. To be fair, there was a lot of good news! My son's alive today though the doctors wondered aloud if he would be. He is not retarded though they speculated he might be. And he's not epileptic though all signs indicated he ought to be. But there was bad news, too. He has challenges. Some brutal ones. He's got delays. Some heartbreaking ones. He's not, well...typical.

And there's the rub. Until I no longer had it, I never appreciated the beauty of normal. Nor did I understand the allure of the typical child until I was faced with raising a son who wasn't one. I had spent 9 months dreaming dreams for my first little boy. And they could not have been more different than our reality. I'd envisioned him learning to crawl in our living room, not in the neurologist's office. I'd pictured scheduling our lives around t-ball games, not in-home therapy appointments. I'd imagined my son the most popular boy in the school...not the last one to be picked for a team. I had banked on normal. But my dream of normal disintegrated right before my very eyes.

The death of a dream...whatever the dream may be...hurts. Not just hurts - it throbs. For some of us, our dreams are crushed through the news that our child has extra or different needs. But for others of us, they decimated by a husband who claims he's fallen out of love. Or by the news that our physical bodies are failing us. Some of us are swimming upstream through financial ruin, job loss, rebellious children or abuse. Dreams can be dismantled in more ways than one. And each way is hard.

But it's in the hard where we find common ground. yes, the discovery that our child is different can be a cruel and merciless one. We grieve, mourn, and weep at this new, callous truth that has so thoughtlessly invaded our lives. But sorrow isn't reserved for the parents of special needs children.

All women understand loss. We all understand wounds. We understand despair. We know what it's like to be overwhelmed and under-prepared. And it's on the bridge where we meet. The women with typical children...and the women with atypical children.

The death of a dream...any dream...calls for compassion, not advice. It calls for understanding, not judgement. It calls for unity, not abandonment. It calls for hugs! (Lots of them!) It calls for prayer.

It calls for a friend. Not an us and them. It calls for an us plus them.

So how can you be a plus in someone's life when her life seems so different from your own?

1. Listen first. Advise only if and when she asks.
2. Meet practical needs. Does she need meals? A running partner? A babysitter? A maid? Discover the need and meet it.
3. Ask direct questions, and listen thoughtfully. She will appreciate your interest in the specifics of her child's challenges and in the progress (if any) her child is making.
4. Laugh with her. It's good medicine.
5. Pray for your friend. She needs it.

Take the time to walk in someone else's shoes. When you do, you will bless your friend. You will become vital and irreplaceable part of her new dream for her child. And, in time as she's able, she'll pass along to someone else who needs it what you've given her_love, hope, and the courage to dream new."

Wednesday, September 15, 2010

The Cadillac of Disabilities - Rant #3

When you are "dealing" each and every day with something, you don't really want to hear someone tell you that your child has the "Cadillac of Disabilities". I mean really, Really, REALLY don't want to hear this.........

The truth is, Elise probably has an "easy" disability. We know what she has. There is a clear, definitive way of testing for it. It is very simple nowadays to test for it....and no chance of missing it. While there is a wide range of time-tables and medical issues that may occur, there are many aspects that are defined by the chromosomal framework.

The person that told me this has not one, but two children with a profound degenerative disability...that they were born with, but that did not manifest until they were older children. They were "normal" while they were young, but they are now losing verbal control, are in wheelchairs, and are no longer independent at all. They are in their late teens, the time in life you should be letting your kids try their wings in the wide world, not working backwards...

My girlfriend, that I tease is my "borrowed" friend, has 4 kids as well, and every time she turns around one of them has some crazy new issue that is virtually indefinable. None of the issues are able to be linked together to "make" a label. Allergies that cause myriad medical effects, sensory issues that are never "enough" to earn educational intervention, and now her oldest is "day-dreaming" in class. Her gut told her that it was not right. She was just told that this child is not day-dreaming, she is having mini-seizures. WHAT? There will be further tests, but they are flying blind...they have no starting point. There is no One Test that will be able to give her parents an answer or a framework of what to expect.

With Down Syndrome, at least we know to screen for certain things. We know that many people with Down Syndrome in previous generations did not "die from the Downs" nor did they start with such low IQ's. That, in fact, children died from heart conditions that now can be surgically corrected. 50 years ago, the medical community told parents not to let them run or get too excited because their heart "could not take it". Thyroid left unchecked caused not only weight issues, but would actually cause mental retardation that would drop their IQ significantly over years... Vision, hearing, and blood work screenings prevent multitudes of secondary diagnoses. We learn more and more as the years progress. The chemo protocol that was followed for Elise had been used on less than 20 children when we decided on it. They had learned the while the fragile construction of cells made them more susceptible to cancer, the fragility of the cells also allowed less aggressive chemo to have better results with fewer side effects. (Not that this made it all sweetness and light!) The more aggressive chemo actually caused their bodies more damage than it helped...crazy, huh?

The monkey wrenches that come up now are the secondary diagoses of Autism, ADHD, Hypothyroidism, Leukemia, Cardiac malformations... The primary diagnosis of Down Syndrome is becoming fairly straightforward...not easy, but more understandable in general.

I am thankful that we have the answers we do. I am thankful that we are not doing this in previous generations...I am thankful that there are more opportunities and hope!

I am thankful that I get to watch my girl run and play and not worry that her body will turn on her...she gets to relish life...and I get to sit back and ride in her Cadillac! :)

Heads Up - Information Blitz :)

Hey! SO here's a piece of information for my local friends...and thought I'd just try and get it out. A friend contacted me to offer this up for those who would be interested:

TACA (Talking about Curing Autism) is having a meeting this Sunday, September 19, 2010, from 2 until 4 at Emory John's Creek Hospital. Dr. Bob Sears will be the guest speaker and will be speaking on his new book, The Autism Book. This will be a great opportunity to ask questions and hear about his research.

There is no charge, but parents must pre-register at the TACA website:

Please pass this along to anyone you think may be interested!

Thanks so much!

Monday, September 13, 2010

Speaking of Encouragement - Here's an opportunity!

If yesterday's post "got to you"...and you are looking for those opportunities to encourage people, here is a great one!

Run over to Facebook and encourage this mama and her son. Friends for Cian is a group to support in prayer; verbally; and if possible, financially a family that was just handed a devastating diagnosis.

They've been struggling for years to figure out what was causing Cian's (pronounced "Key-an") debilitating pain, and learned only just last week that he has something called Pediatric Chiari, which you can read up on in the link, but the short version is that the brain is slipping down and causing compression on the spinal cord. There is no "cure". They are hoping that it will be able to be fixed in a single surgery, the fact is, it often takes several. There are very few surgeons that will even attempt this surgery. Nobody likes moving the brain around, and this particular situation involves both the brain and the spinal cord...which are both touchy parts of the body. Miraculously, the neurosurgeon that is probably going to be doing Cian's surgery is Dr. Jorge Lazareff, the same one that separated the Guatemalan twins a few years ago. (If you are a TLC junkie like me, you probably watched the special.)

But there are SO many stressors going on including thoughtless teachers, financial stress (their current insurance likes to encourage health, but they don't like paying much to help fix illnesses), and most importantly the pain and health of their boy! There is also an increasing concern that their youngest daughter may also have this.

I really hope that you will feel led to give the amount of a coffee (you can give it up for a day!) and most importantly, pray for this family!!! They need a miracle and peace. And if you can do either one, post up on their wall that they are in your prayers and thoughts, remind them that they are not alone!

Sunday, September 12, 2010

National Day of Encouragement

I just read about this on a friend's blog and then, me being me, confirmed it on Wikipedia and checked out the day's history on their own site. So, according to my homework,


I'll be honest, I probably would have run with it regardless...just because it is a really cool idea. I like it almost as much as the Victorian May Day, where they put flowers on people's doorsteps...the sweet equivalent of ringing the doorbell and running...I've always wanted to do that one...someday I will. It's on my bucket list. Seriously.

ANYWAY! As I've mentioned before, one of the primary goals of this blog was encouragement, the other being education. So, I'm going to run with it today.

The mind-blowing synopsis it this "You Are Not Alone!"

First and most importantly, God is a Loving Father (even if your earthly father wasn't, He Is!) And has promised, "I will never leave you or forsake you." In those specific words, twice in fact, in Deuteronomy and Hebrews. And in Psalm 34:4 David even gave a personal testimony that He "sought the Lord, and He answered me; He delivered me from all of my fears!"

Second of all, I have said before that parenting is not easy. I don't care if you have typical kids or kids with "stuff". It is NEVER goes according to what you had planned in your head before you got there. In fact, I am going to go one better, LIFE will not go the way you had planned. And, I'd just like to say, that is probably best. I am doing a Beth Moore Bible study of Esther and there is a phrase that is used in the Hebrew that sets up a story in a grand way that always "introduce impending catastrophe or doom". I dare you to pick a moment in the Bible where there is a catastrophe and where the final conclusion is not so amazing makes your idea of happily-ever-after look paltry.

Now, I'm hopefully far from the conclusion in my own life, but at every juncture where I seriously don't think I'll ever be able to lift my head from the weight, the mini-conclusions have me dancing more happily than I thought possible. Even over tiny stuff. I have a sneaking suspicion, it will only get better.

Our responsibility in this is to find people to help you with your burden and help them with theirs. If everyone's weight is lighter, AND you have a friend, then you have a mini-party right there!

I believe that we, as a society, and even more as a "Special Needs" community, tend to closet ourselves from each other when we struggle. When things are not okay we have difficulty reaching out.

Those whose life feels like it is imploding from pain and pressure don't want to reach out. We feel like it will take too much energy, that we don't have enough to spare. Those on the outside, who seem to be getting along pretty well, don't want to "interfere", "complicate", "rub their face in 'normal'", or "bother" those who desperately need the phone call, the visit, the cup of coffee, the written note, the prayer. This in turn causes those who are drowning to feel even more isolated and depressed, which makes the struggle even more exhausting.

Take it from me, even if you feel awkward, the phone call helps. Even if you write the same note as 10 other people and the same as you wrote last week, it is encouraging. I have an entire under-bed storage box of notes from when Elise was on Chemo. My kids will have to throw it out when I die, because I Cannot.throw.them.away. And I didn't have any idea who wrote more than half of them.

I dare you to reach out for someone this week. Encourage someone. Whether this is easy or not. It will bless someone. Even if things are going rough with you, you will not feel so isolated. Email me if something happens that is cool. Email me if things are so dark with you, that you seriously can't reach out...and I will make sure that YOU get the note that you desperately need!

Dark is dark, and a candle is SO MUCH LIGHTER, and someday, It Will Dawn. I promise.

Friday, September 10, 2010

Childhood Cancer Awareness Month

Just a little giggle to go along with the rejoicing post at Sticky Elephants: 6 Years.

I have said in the past that Elise is nothing if not thorough...with a is the short list on why I say this.

Elise was born in October, Down Syndrome Awareness Month.

She had Open Heart surgery in February, Heart Health Awareness Month.

She completed her chemo and got the official word that she was in remission from AML leukemia in September, which is Childhood Cancer Awareness Month.

And I simply refuse to let the endocrinologist draw labs to check Elise's thyroid levels in January as it is Thyroid Awareness Month....because, say it with me: Elise is nothing if not thorough. Ha!! :)

Thursday, September 9, 2010

We're Wired, Baby! :)

We're on Facebook! Come like us, and under the discussion tabs, there is a request for input! Easy Peasy!

Tuesday, September 7, 2010

The Day to Day #1 - Service Woes

One of the things that I was asked by a friend who is entering the lovely early intervention hoopla, was to discuss "the obtaining of services and whatnot".

Um. I love you, L.P. So here goes. I'd rather stick a white hot poker in my eye than deal with the obtaining and maintaining of services. I would rather be caned regularly. I'd rather have any number of very painful and horrible things done to me. Because nothing hurts like the admission that your child needs these services.

To start with, we witness our child show greater and greater proof that they are not quite doing what they ought to be able to. Then we have to go to a professional, typically our pediatrician, to admit this. They grill us like they are our parents and we are 5 and have broken our mom's favorite lamp. They then smile and say something pat and trite and write up an referral to an early intervention intake center.

We call this local intake center and they then tell us that we never even had to get a pediatrician's referral, and we roll our eyes and wish that we hadn't gone through that brutalization.

We make an appointment and go in. Our child then does one of two things. Either they do more than usual or they decide to do ABSOLUTELY NOTHING. hurrah. Now, if they do great, we are pleased, and yet at the same time annoyed because now ANOTHER professional thinks we are crazy. If they do poorly, it totally stinks because our fears have been made good on.

But I digress, when we get to the intake, we get to fill out the government's packet equivalent of the Spanish Inquisition. Which is SO DEPRESSING. We realize as we fill out this packet, just how behind our baby is.

Then you get to wait for a "million years" while all the information is processed.

When you are approved then your entire life is planned between therapies. And cleaning for when the therapists come to your house...because you don''t want another area of life under scrutiny. Because you want to look like you have it together SOMEWHERE!!!

The therapies are awesome, because they really do make a difference. Even if it takes a while to see the impact, your child will eventually improve. And so you continue to jump through every hoop the government asks you to. With joy....mostly.

You spend the year seeing the improvements that your child is making. You get giddy as your child colors all over your wall, because you are thrilled that they have that much control over their fingers so as to manipulate the *sharpie* they found when you were addressing Christmas cards...(Yes, true story! Insert "rah! rah!" plug for Mr. Clean's Magic Eraser) You celebrate every milestone that your baby hits. You find yourself resentful that there is no sparkly sticker to insert into your baby book for the "doesn't throw sandwich crusts off the table" day. But you really do rejoice over stuff like that!

End first year. For the Annual Review to requalify your child for the intervention therapies, you have to fill out the Spanish Inquisition Packet again. And all your therapists (who, by the way, are now your New Best Friends because they are always at your house) assess your Pookie. And you have seriously deluded yourself into thinking that your kid is just not THAT far behind anymore...after all you've seen ALL THIS IMPROVEMENT!!! And your New Best Friend (therapist) sits down with you, while your child takes advantage of this moment to eat bugs out from under your dishwasher. They go over all your child's improvements, which you agree with...and they tell you that while they have made 4 months of improvement in the last year, that still makes them even further behind developmentally than they were before. And you hate your New Best Friend for bringing this information to you. You, know, totally shoot the messenger type of stuff.

The long and short of this is that you start getting nauseated about a month before the Annual Review hits, because you know that for all the positive that you give throw-down-parties over, compared to other kids, your baby is not doing that great. And it is sad.

But, I encourage you to continue to give ALL the Throw-Down-Parties you can. Try and find the sparkly stickers and WRITE ALL OF THE BIG STUFF IN YOUR BABY BOOK!! Because it is really fun to be excited...and it's cool to look back over. And it encourages you and your child, which is the most important anyway!!!

Personal Tips for Dealing with Services:
1. YOU HAVE TO ASK EVERY QUESTION THAT YOU CAN THINK OF BECAUSE NOBODY VOLUNTEERS ENOUGH INFORMATION. EVER!! Talk to other parents, because 50-70% of the stuff that is available to you is never volunteered by your doctor.

2. Always give way more information than you were asked to. Always. I am pretty sure that Elise has been reapproved for the Katie Beckett Deeming Waiver each year (It is a secondary insurance through Medicaid. If you want to know more, email me.) because I send in so much crap that they seriously approve us because they don't want to read anymore.

3. Do what you have to do at the Annual Review, but then insert it all into the trash bin in the back of your mind, because if you dwell in the current status of your child all year, you will never get to celebrate.

4. Celebrations are important. ALL of them!!! There will always be something worthy of a party! :)

Monday, September 6, 2010

Rant #2 - Retarded...Yes, I Really Said It

For all the publicity this word has received...I have very mixed feelings.

I've seen this used negatively, after all I grew up in the '80's and '90's. It was thrown out as a name calling equivalent to "double dog dares". It was mean spirited and was not nice. It should have not been used this way...but the ugly names have, in general, escalated such a way that I think it has really lost some of the original Umph.

It was used in the Jack Black movie "Tropic Thunder" and Jennifer Aniston threw it out there a few weeks back. I've not seen Tropic Thunder, but talked to a couple of friends who had. And I looked up the Jennifer Aniston incident. I saw both of these incidents as poor taste but not more than that...they were not being virulent to someone, they were reverting to their 80's/90's teenage selves.

There are movements out there trying to take this word out of circulation, and make this word and its derivatives hate speech, etc. The one I linked up, I like best because it is addressing the public as individuals, asking them to make the right choice...rather than regulating it legally.

The Media tore both Jack Black and Jennifer Aniston a new one over their careless uses. Yet, on the other side of Media's mouth, this ugliness happened. And I never saw a word. Not a single word until a friend posted it's (sorta, somewhat) resolution up on Facebook.

For all the public hue and cry, it's funny to me that it is still a legal definition that if your child's measureable IQ falls within a certain range, that will be your child's legal educational label in certain states.

As far as my own experience, I found comfort in it. Oh, hush, your horrified intake of breath! I heard you!! Even it's public definition is comforting to me, and I'll tell you why.

In the throws of those first few weeks, I remembered it's dictionary definition. "To be delayed." I was so relieved to hear it. So, whatever my kid had, she would be able to achieve anything. It would probably just take a while longer than everybody else. It helped tame my fears. There was a hope. Something to hold onto in the dark abyss of fear. Ironically, I found it in the very definition that was tearing apart my life...

So, if you were looking for answers this particular post is not gonna give you any. Because I am still thinking this one over...but I thought I'd poke your brains to think more about it than what the Media and various Spokespeople say...because it really is more than the knee-jerk...especially to me.

"Them"- Question I Try to Answer #1 - What if I'm trying??

So. We have already proven in less than 48 hours that we need this blog. And this makes me even more thankful that I've stepped out to put my foot in my mouth. :)

In answer to my last post Rant #1, I received a comment in which a parent with a typical child responded with her own fear and hurt. This Brave Mama said that she was afraid her well-meaning attempt to explain was described as gawking and that hurt her.

I labelled that post as a Rant, because that is what it was. A Rant. That means that the feelings expressed are feelings. Not necessarily fact. It allowed me to tell what has happened numerous times. More times than I care to say. And it is happening more lately, as Elise's sheer physical size is making the excuse that "perhaps she is younger?" no longer applicable in explaining the "oddity" of her behavior in public.

I offer that particular situation as an example, because it has happened, with variations, so very many times. It was in a similar situation that I witnessed the perfect response. I had wondered if I would ever have the guts to say something to someone...and had run many scenarios through my head. I had concluded very similarly as what I posted, when I over-heard this response:

"Mommy, what's wrong with that girl, right there?" Complete with the finger point.
She turns her head and peeks at Elise, for just a moment, turns back, and wrapped her hand around her son's finger and told him, "I don't know, but she's just a little girl. She likes you. She thinks you would be a nice friend. I bet she would be a nice friend, too. Go see." I just about bawled. Right there. Complete with the shivering hiccups...I managed to wait until I was safe in my car, and sniffed all the way home...

There is no harm in not having the "right" response ready. There is no harm in looking at the child being asked about. There is no harm even in the whispered, "I'll answer you later, in the car." There is a problem in your panic scaring your kid. There is a problem in trying so hard to be politically correct, that you confuse your child, and keep them from making a friend that would help them grow to be better people. And I am certainly NOT saying that my child or any child with special needs is a better influence than a typical child. I am not stupid. It is hard to be Elise's friend. What I am saying, is that the strength and effort that it will require to befriend my child, and others like her, will have a positive impact on their character.

I don't want to hurt any one's feelings. But I want to be honest. I want to tell the Whole Truth. So, please don't quit following because you felt attacked, allow me the opportunity to explain. Ask me more questions. Tell me what would help you more...but keep in mind, sometimes the truth ain't pretty. And I absolutely know that goes both ways.

In answer to the honest question, "Do you plan on complaining about parents of typical children again?" Maybe. Honestly? Probably. But not to be self-righteous, to help you and to help you help us. :) But, don't worry, I will undoubtedly complain about parents of kids with special needs....I have a few pet peeves that I feel hurt our "cause" more than anything anyone else could do. I also plan on throwing myself under the bus. Actually, the next planned post is just that. :) I will also be adding the practical struggles and bizarre stories that are our life. Have no fear, this is the WHOLE Truth.

So, thank you to the Brave Mama who spoke first. I appreciate your willingness to call me out. I am trying to address the divide, heal both sides...honest.

Friday, September 3, 2010

Rant #1 - But WHY do you need a diagnosis to teach your child about mine!!??

The first Us and Them rant is mine.

If my typical child goes to the playground, and is wierd, then the other kids react, and tell him that he "has" to quit that...and so he does, and he learns that he must not do X.

If my child with a diagnosis goes to the playground, and is weird, then they run to their parents, and ask what is wrong with that "funny-looking little girl over there?" And then their parents gawk at my child and try and round up a word that is all inclusive and defines that child. They tell their kid and because they got some kind of medical term thrown at them, they avoid my child like they have some kind of contagious plague...because there must be something crazy wrong with them to get their parents all freaked out... Consequently, my child pursues them because they were her friend just a minute ago...and they panic and my child is left alone and bewildered.

If the parent had told them that they didn't know, or told them the basic information that they had asked for in the first place, they would be more likely to go back to doing what they were doing and respond naturally to my baby...

Elise craves routines and clear boundries. I believe that most children do...but it is even more necessary for her. If she hugs Suzy and Suzy looks her in the eye and says "No hugs, please." Elise is more likely to abide by that boundary, than if Suzy runs away and whispers about her and refuses to make eye contact for the next 2 weeks.

I understand that it is easier to sort people than it is to get to know them, but we miss out when we avoid what we don't understand.

So, if your child comes up to you and says "what is wrong with that funny-looking girl?" Try out questioning back, "what do you mean?" Or answer honestly and specifically.

On a child with a hearing aide-
"What is wrong with that kid's ears?"
instead of :
"They are bionic ears!" or "He's deaf." or something embroidered and entertaining
"I'm not sure. He may not be able to hear very well. I think they are hearing aides, and they just make it louder so he can hear what you can."
If you think your child can ask nicely, you can encourage them to ask that child or their parent...

On a child that has Downs or some other physical differences:
"What's with the funny-looking girl?"
"Everyone is made differently, and she has feelings, too. Be nice and try and include her."
"She has something called Down Syndrome and she has some thing inside her called a chromosome that is confusing her. She can still play and understand you, let her do what she can."

Sometimes I tell kids who are confused that "Her heart is only 4 years old, even though her body is 7. She wants to play, and you can tell her to play nice if you have to."

I advocate answering only the questions that are asked. Do not bombard with unnecessary information...they will follow up when they need it. Plus, you will not have to "fix" your embroidery down the road.

But if there is no need to pigeon-hole someone, don't. You don't define everyone for your child, try to avoid doing that with people with obvious issues...they are still people and if your child learns that now, all the better.

People are people. Kids are kids. Talk, learn, make friends. I promise it will change your life in a good way.

Why I Think I Need To Do This...

One of the reasons I thought I could try for both sides of the veil:

I AM on both sides of the veil! I have typical kids and a kid with extra stuff. For all the things I have to do for my child that has issues, she is not my only baby. I have to figure out how to parent my typical kids, how to meet their needs, how to explain their sister to them. For my daughter with actual diagnoses, I have to expect everything I can. I have to demand what she can give and I have to support what I must support to help her develop...and I have to love them all equally!

I'll be entirely honest. It's hard to have to parent in a split personality. It would be so much easier to have to do one or the other. I feel it is unfair to my typical kids to expect so much more from them, even though they can do more...but of course, if I don't, then I am doing them a disservice. And with Elise, I cannot expect her to be on par with her peers...or even her siblings...but I cannot do everything for her and expect for her to grow to be happy and independent.

The second reason I think I need to do this is:

I believe one of the reasons that there is very little information on this stage of life in kids with Down Syndrome is that this is the defining time of their social developement. And it is tricky. Hopefully, by this time, the really important medical issues have been addressed and are either "fixed" or are in a holding pattern. The major decisions of independence are not yet pending.

The need here, I feel, is that to help my child find her place I have to teach her how to be with those who are not like her. She is trying to relate. Elise, in particular, is fighting to communicate. She has her most profound delay in speech which has a devastating effect on making relationships. If I can help other parents understand, perhaps they can help Elise's peers understand, then maybe it'll be an easier path for her or those like her.

Downsy? (Us and Them education)

Okay...Why the title?

This is an educational post...for Us and Them!

Elise is our 7 year old girl. She has Down Syndrome. Elise is the inspiration for this blog. She has turned our life inside out. She has grown us. She has strengthened us. She has shown us God on a grander and more mind-blowing level than we could ever have seen without her!

We didn't know Elise was going to have Down Syndrome. It was a big FAT take-your-breath-away surprise. So when she was born, to get the confirmation diagnosis, we had to wait on the bloodwork. During those two weeks (yes, it took that long in 2002), we would look at our tiny girl, and say no way...she does not have anything wrong with her...because we couldn't wrap our minds around it. Yes, we knew that she had tilting kitty cat eyes, and so she was little...but when she was first born, she didn't present with all of the blatant physical signs of Downs.

When we finally got the bloodwork back with the indisputable diagnosis, we would fall back into saying that she was "only just a little bit Downsy" she was a little blonde, or a little silly, or a little short...or whatever. The older she's gotten, the more traditional features are observable. But we've sort of kept this silly joke, because this joke keeps the Down Syndrome in perspective. It is not Elise. She is SO MUCH more than her disability...she is a delightful, clever, firecracker of a girl...who happens to have Down Syndrome. She is superlatively more than a chromosomal diagnosis. (Hence the URL SuperDownsy)

However, the educational part of this post is this. When speaking of a child who has a diagnosis, no matter the diagnosis, it should not be the defining characteristic of that child. The girl is not the "little downs girl" nor should there be the "autistic boy". They should be the "girl WITH Downs" and the "boy WITH Autism". It should be like if you were describing the girl with blonde hair, the boy with brown eyes. In using a disability as the only description of a person, it is like using race to define a person. The stereotypes come hand-in-hand with using a term to be all-complete. It is not fair. No one wants to be equated to be no more than a fraction of their life. This is the same thing.

The iron-clad reactions to a diagnosis is what we try to protect our children from. The reason that parents react SO strongly to that phrasing is they want their child to define themselves. As is the right of every child.

I will use it as the primary description if she has gotten lost, because it figures big into her ability to make safe choices. But if I am describing my is something I may or may not tack on...because it is not how I think of her. She is my pocket baby. She is my vibrant and joyful child. She is expressive and has the most gorgeous skin and eyes. She is Elise.


That's the question I've been asking myself for 3 weeks now. Followed very closely by, HOW do I do this?

The reason behind this blog initially was that I went on a hunt for blogs of moms with kids with Down Syndrome who were also school age, and found very few. There were many that chronicled the transition to This Side. The entering of the trenches, as it were...and a few that shared the struggles of an older child transitioning to adulthood... Now, these are encouraging, the Beginnings because the memory of the Big Stuff is still very fresh. And they put into perspective the daily weight of Now. The Entrances to Adulthood, give hope for the independence that will someday be attained.

Why do we tend to be so closed-mouthed about the school-aged struggles? I really think it comes from what happened when I started bouncing the idea for this blog off of people.

I asked a few hypothetical questions on Facebook and a couple of parenting forums and got a firestorm of responses...and surprisingly I got one of three responses... 1) I got parents of kids with special needs saying they already had their plates full to overflowing that they had no time for advocacy and they needed encouragement! 2) I got questions from parents of typical kids asking HOW to treat kids with special needs? How to answer the questions their kids were asking? How could they help us, because they didn't even know what we were going through. 3) I got parents of kids with special needs reprimanding the phrasing of the questions of the parents of typical kids.

So I sat down and really started thinking. Did I want to meet the needs of Us or Them? There were very clear needs for both sides. Which need was greater? Which need did I feel equal to?

I just want to make one thing perfectly clear. I am not equal to either need. This is a bumbling attempt of a regular parent to open a open the lines of communication between the Us and Them. Because we aren't any different. We are parents trying to care for our kids and provide them with as much love and support as we can. We pray over them and agonize over if we are doing our best by them. We are worn down by the daily grind, the only difference is what the daily grind entails.

I have 4 kids. I get a lot of shocked looks over the number of people in my posse, and get the "cute" comments of: "I don't know how you do it with 4 kids...I have my hands full with 1 or 2 or whatever..." My response is always the same. "Kids are like Goldfish. You know how goldfish grow to the size of whatever tank they're in? Kids are the same. They take up all your time. If there is 1 or 6, they take up all your time..."

If you are a parent to a kid with special needs, then people tend to leave that as your Label. Nevermind that I have 3 other kids who do not have a legal diagnosis. But do not all our kids have needs that are unique to them?

SO. What I am going to start this as, is place where we can ask all the questions that no one feels safe asking. I am going to tell the Whole Truth. I have a bloggy friend that labels her posts as Brutally a clarification of whether her content is for the faint of heart. I may have to ask her if I can borrow her rating system! :)

I am going to do "Us" and "Them" posts. What we "wish They knew" and what "They" need to ask and understand that no one ever answers. I would LOVE to have guest bloggers. I would love to hear from you. If you have a rant, if you have a questions, if there are suggestions that would help, please don't hesitate to email me.