Dear Fellow Warrior,
I don't know you, yet I feel that we are connected. I remember walking in your shoes and fearing for the future. I remember feeling so alone, then finding others who were experiencing the same emotions, and it helped me cope with the news that you are dealing with today. And so I write this letter in the hope that you find it. I write in the hope that you know you are not alone.
One year ago today, we received Quinn's Down syndrome diagnosis. I sat down in front of the computer and told the world our story in a post that makes me cringe when I read it now. In the year that's passed, I've had a chance to look back on those raw emotions and remind myself that I didn't know then what I know now. And most importantly, I hadn't met Quinn yet, whose very existence is my greatest accomplishment. He represents my courage in a time of doubt, patience in a time of chaos, and the unyielding strength of a tiny human that I took for granted.
Read the rest of this post at Define Crazy blog.
My nine-year old has faced many health challenges in his life, including failure-to-thrive as an infant, seizures through age 4, and food intolerance. However, more recently he has acquired chronic and severe eczema. The last flare-up lasted over six-months due to unknown environmental and food allergies.
My husband and I often ask ourselves why Parker--with the heart and attitude of an angel--must suffer so much. He just wants to be a normal kid and do the things normal kids do.
When his rash began to spread up his neck and onto his face, he also had to endure stares from his classmates and constant comments from strangers such as "Ooo...bad sunburn!" or "What'd he get into?" I even caught a grocery bagger coming up behind us to "sanitize the aisle" after a shopping trip where his was particularly irritated and scratching non-stop as we stood in line.
Thankfully, I was able to pinpoint a few major triggers and after a lot of research, discovered the perfect and individual combination of natural and prescription remedies to help him heal both inside and out.
After making the difficult and challenging choice to homeschool him for the remainder of the school year, we began finally seeing his condition improve. Today, I am happy to announce my 9-year-old looks great and his back to his old goofy self. He sings and dances in the bathroom as I apply all his creams and ointments post-shower. He can't wait to be Hawkeye for Halloween and told me earlier this week, "Mom, I do NOT want to be that house that doesn't give out candy just because I can't have any!" As soon as he is up for a break from his schoolwork, he is running around the house practicing shooting his arrows.
So what I have learned from all of this?
1. Maybe it's obvious, but children are resilient. No matter how awful he felt or looked, Parker would still tag along with me on errands, and even to work when needed. Sure, there was a point where he watched a lot of T.V. and didn't do much. But as soon as his energy returned he was up and ready to face the world. A day doesn't pass without several hugs and smiles. He knows intuitively I have done all I have in power to help him get better.
2. People will stare but we don't have to care. Parker seemed completely oblivious to the looks he got when we were out in public. He didn't try to "hide" himself and on his good days, actually drew attention singing along to the radio, or making sure I understood exactly which sports car he liked in the parking lot.
3. There is only so much we can do as parents; the rest we have to let go. There is a part of me that wants Parker to get better for good. I am tired of micro-managing every piece of food that touches his mouth and being concerned about his exposure to dust or hair or chemicals in the air. But stressing about all of it just puts everyone in a bad mood. I have my arsenal of remedies at hand, and have resolved to take action as soon as I see a problem arise instead of going crazy trying to prevent a flare-up in the first place.
4. Normal is a state of mind. What is "normal" anyway? Normal isn't always a good thing, or even a great thing. As parents of children with unique needs, our normal may look different, but it is still normal to us. So what if we can't participate in gorging all the Halloween candy next week. At this point, Parker is too excited about trading in his candy for tickets to see Thor to care!
Jack’s feet are bigger than mine. No more guessing when he’ll pass me up, no more can I slip on his shoes to quickly run the trash out… well I can, but when I tried that on Tuesday night they slipped in the back as I walked. They are new shoes that we bought last week, and they are another half size bigger than his last pair. It means that his feet are bigger than mine. That’s it.
It’s exciting to see Jack growing tall and strong, his face thinning out, and his arms and legs becoming more muscular. His feet will no doubt be as big as his Daddy’s some day. While his Dad did a lot of growing later, in high school, college (even after we were married!) Jack seems more on my trajectory, though at his age I was about half an inch taller than he is now. There’s nothing tiny about our family. There’s height for multiple generations on both sides, and according to some of those estimates Jack may be about 6’7”, and his little sister should end up a little taller than I am at 6 feet.
I’ve known this, that my kids would grow up, because that’s what children do, all children. But I admit I am a little more surprised when I look at my son and realize he is really beginning his teen years.
It is made more difficult when testing comes back and puts some of his skills “at the level of a 2 year-old.” I realize now more than ever, that to be his best advocate, I need to be mindful to downplay the difference between his abilities and his chronological age, and set that example for others. While some of his fine motor skills haven’t caught up, and frankly, might never be more than they are now, I can make sure we are changing out the toddler items with things that are more age appropriate, for example, we are looking for good straw cups that don’t leak, and don’t have little cars and trucks printed on them.
Did you do it? Did you rock out with your socks out? Did you wear your crazy socks to raise awareness for World Down Syndrome Day?
I did not; I decided to wear my plain white socks, just like I do every day.
I was not thrilled with the idea of wearing such different attire that causes a person to stand out from another. I do love the idea of raising Down Syndrome Awareness but not this way. The Down syndrome community has always talked about and advocated for those blessed with Down syndrome to be treated just like everybody else, to be included rather than be excluded.
So what do we do, we have a day where we call attention to how different we are from others. How our socks make us stand out and create curious looks. Does this support the idea of inclusion or rather does it continue to show that those with Down syndrome stand out from others and deserve curious looks?
Last year we were more alike than different. We celebrated the success and belief that those with Down syndrome are just like you and me.
This year we take a huge step backwards and say….
“We are more different than alike”
A plane flight with kids is generally on the list of challenging parenting situations. Of course we have flown all together before, several times, but it just seems like the kids were so much smaller last time, more manageable and moveable. Jack has turned into a tween, and those long arms and legs have more strength than they did just a few years ago. I cannot carry him down the aisle of a plane, or manage a heavy bag while holding his hand; if we want him to go somewhere, or sit someplace, he has to want to do it too, or it won’t happen.
That’s why I told Jack about our surprise trip to Southern California to visit family, and that famous mouse. While we left it a secret to his sister, I wanted to make sure that he saw the benefit of getting up while it was still dark. I was hoping that by going through all of the things that would happen he would be more prepared, and more likely to happily participate.
I think it worked because TSA pat downs, and the over-crowded amusement park didn’t seem to faze him. He ate his way through a white table cloth dinner at a fancy steakhouse, and seemed to enjoy zipping about the entire state of California, a different part of our family in each place. Our holidays really could not have gone any smoother.
Jack has grown up a lot over the year. He’s matured. He’s more tolerant, and calmer when he’s in distress. He’s doing a better job of letting us know what he needs, and we are doing a better job at listening. And I’m less anxious, in general, like maybe I do have some of this parenting stuff down now. Specifically, when it comes to travel and airport security, I know we’ve done our best to be organized, follow all of the rules, and leave plenty of time. We try not to “hold up the line” but not if it makes our kids feel rushed. I know that some things will go smoothly, and some things won’t, but chances are we will all make it through relatively unscathed.
And we did. Better than unscathed, we came out happy, with some great memories. Of course there’s still one more drive ahead of us… let’s hope it is as easy as our other travels have been.
Cheers to a great 2012, and the prospect of an exciting 2013.
Well, that's it, this is the last year that Jack is going to fit into one of those one-piece costumes. They have made life so much easier for us, and because they are recognizable characters, it's made it easy for others to figure out what Jack is dressed up as on Halloween because he certainly won’t wear a mask or makeup. His little sister has thankfully switched costumes from Zombie Homecoming Queen (which I did not approve), to a very precious Sock Monkey get-up. I will be dressed as a mom who spent too much money on costumes, and is regretful that she didn't sew anything for her children.
Jack has always had great costumes. He began the tradition as a 1 month old in a Chili Pepper snap up cozy. Then he was a Fireman, a Doctor, Incredible Hulk, and Mr. Incredible. He's also been Spider Man, Bat Man, a Pirate, last year, a Cowboy and this year a character from Star Wars. Something Storm Trooper-ish. I love the fake muscles that are stuffed around his strong thin arms. It was sillier when he was a five-year-old in the Incredible Hulk suit. Now there's less contrast. He’s still wiry from being young, but soon enough his own muscles will be that big.
The dress-up box has become crowded with all of those costumes, and now our second child is getting too big for those smaller play-things. It’s hard to believe that he ever wore that little zip-up fireman outfit. He wore a hat that year, but I realize now that he probably never wanted to wear it, but his little arms couldn’t go above his head to take it off. After years of no hats, he wore another one last year as a cowboy- I was so proud. No masks, no hats, no makeup, simple this year for him and for us.
Halloween is not my favorite celebration. It all seems like so much effort for such a small reward and the evening fraught danger. But our friends have made the entire thing a lot more palatable for me. We will go out tonight with a group of people who love us just as we are, warts and all. Understanding, helpful people who want to include our family. Jack is already being silly as the excitement of the evening draws near. We won’t last long I suppose, but just getting there is most of our battle, any candy we get after that is, well, icing on the cake.
I get a note each night from my son’s teacher. She tells me what he did that day, any struggles he had, and provides information about what’s happening in the classroom and around the school. It's a great way for me to catch up on what he's doing in school, and a great way for each side of the equation to have context for conversation with Jack. When we go out to dinner at his favorite restaurant, I write Jack’s teacher, then she and the aides can ask him questions about what he did the night before. It's also great that the email goes to both my husband and me. So many times in the past I would read Jack’s little journal, or have talked to the teacher when I picked Jack up from school, and that information would never make it all the way back to my husband. It is fantastic for my two favorite guys to have something to ‘talk’ about.
There is the usual update about OT and PT, and how well he walked on their social outing. I love hearing about his art projects, because art isn’t something he likes to do at home. And while I know that they have a yoga class every week, I know that they adapt a lot of the moves for him because he doesn’t really like to sit still, and doesn’t like his body being manipulated in any way. But I’ve seen him stretch out across the lawn, so I know that some of those moves are probably familiar to his body. I have seen him participate in an art class, and watched his hypermobile limbs bend and bend.
But the thing I can’t get over, is that lately I’ve been reading that he “did chores at the end if the day.” Chores? Yes, chores. At school he clears his plate after snack. He wipes down the table. He pushes in his chair. Of course he's doing all of this with help, physical prompts, vocal prompts, and more commonly hand-over-hand. But he is still doing chores. He never does any of that at our house.
This chores thing has come up a few times at our house recently, with my daughter noticing that she is held to a different standard when it comes to cleaning up her messes, and participating in the daily maintenance routines of our house. She hasn’t exactly complained, but she knows that Jack doesn’t have any chores at home. On my best day of parenting, I would create one standard, then adapt that to help Jack meet that standard too.
So now I’m thinking, well why doesn’t he do chores? Shouldn’t he be doing the same things at school and home, so we can reinforce learning? It’s not the first time that he has been capable of a skill in one location but not another. For consistency, I believe he should have standards that are similar to those that are set for him at school, and as he learns in one environment we should see the behavior both at school and at home. This transfer of skills can take time, and I’m aware that Jack is on his own schedule of development. But couldn't there be another thing at play here? I have tried a few times to help him carry his plate to the sink after dinner at home, but with no success.
Maybe this isn’t entirely about skills. Perhaps he just doesn’t want to do chores at all, because what 12 year old really wants to clean up anything? ever?
A few weeks ago a friend and I decided to have a Halloween Party for our children that would be so much fun they wouldn’t miss the candy! Our children are all on special diets – gluten free, corn free, dairy free, egg free and so are unable to eat regular candy. But we didn’t want them to feel like they were missing out on a holiday!
Some of our children also have trouble with sensory processing. Some are sensory seekers while others don’t like a lot of stimulation. So we also wanted to include games that would stimulate their senses.
We had our party last night and it was a huge success!
We held our party at dusk so we could do our games in the waning light.
Treasure Hunt: My friend made a terrific treasure map for the children to follow. She drew pictures of places around her yard – a large tree, the front door, the play structure, a bush. Then below each picture she taped a picture of the colored pumpkin that would be waiting at that spot. While the children were occupied elsewhere, my older girls hid the colored pumpkins in their spots. They also put glow sticks pr flashlights inside each pumpkin so they glowed! The children read the treasure map and then ran to find the pumpkins. Each pumpkin had a prize inside. Some of the prizes were glow sticks and glow stick necklaces so for the rest of the game the children glowed and we could follow them in the dark!
Touch and Guess Game: This game is all about touching different things without looking and guessing what it is! My husband cut holes on the short sides of a long box. I covered one end with a curtain. Then I gathered a bunch of different items. As the children put their hands under the curtain I held up a different bowl of something for them to feel and guess what it was. Items used: peeled grapes, cold spaghetti, broccoli, baby carrots, flour, cotton balls, cooked beans.
Paper Plate Ghost: I saw this on Pinterest! Take a paper plate, glue black circles for eyes, a black oval for the mouth, and cute white arms and hands. Glue cut white streamers to the bottom of the plate. And you have a cute ghost!
Our menu was gluten, dairy, and egg free!
Cut up veggies – carrots and snap peas
Fresh pressed apple juice
What’s a party without sweets!!
Chocolate fountain – this was awesome! The children dipped bananas and strawberries in the flowing chocolate.
Gluten free cupcakes
To end the party, the children grabbed their glow sticks and flash lights and chased each other around the backyard. They were screaming with laughter!! Our sensory rich, allergy free party was a success!
What do you like to include in your parties?
We knew this day was coming.
It’s not like we hadn’t been warned.
We had been warned and had experienced it a couple times before, thanks to Emma and Brady.
Though sometimes I did wonder if this day would ever come.
That day is here…..
The day that nothing on the couch or other areas within standing/reaching distance is safe from the grabbing hands of a little Miss Carly!
She pulls herself up on the couch and reaches, grabs, and tugs at anything her hands make contact with. Most of the time it’s some type of magazine or perhaps a page or two of Brady’s school work.
Though one time it was MJ’s breakfast bowl and a spoon as well, apparently Miss Carly did not want to wait for her own breakfast, which was warming up in the kitchen.
The poor TV remote has been victimized multiple times as Miss Carly loves to grab it and then toss it behind her back.
Not only can she pull herself to grab items, she now has the ability to “walk” down the length of the couch and hunt down any and all other items she can find.
As Depeche Mode once sang “The grabbing hands grab all they can”
So while the couch is no longer a Carly free zone, you will not find a single member of the family who is disappointed by it.
This is the busiest time of year when it comes to parenting my son Jack. Once we’ve gone through the usual back to school, adjusting to schedules after the glories of summer we enter the month of October, when every agency checks in with our family. As we have gone through these 12 years we have managed to collect several social workers, a state doctor, occupational therapists, physical therapists, a behavioral psychologist, a program director, teachers, aides, and of course his pediatrician and dentist.
Just scheduling the appointments can be hard enough, but sitting through them has not always been easy. Part of the conversation always includes Jack’s deficits. Always. Obviously that’s why we are meeting, because we need resources for my son that people with more typical children don’t need. Obviously. And you would think that after all these years it would be easier for me to either have a canned story, or just steel myself for the conversation, but I hate it every time.
In spite of the fact that we have very kind, diligent state employees attached to our records, my stomach tightens with the approach of each appointment. I do my best to create some balance, sharing the positive growth that Jack has had over the year, but it almost always must settle on the needs he still has.
I don’t take it personally now. I know that the criteria is there for a reason, and that it has nothing to do with my particular child, but I am also much more conscientious about what is said in front of my son, and what I tell him if we do speak in front of him. If he must be in the room then I explain what we are going to talk about, that it might be sort of personal, and that we are talking about it so he can get the right accommodations. He knows he has struggles, that he needs help, so I’m sure he’s pleased when he hears that his aide will still be funded, and that he will get a more structured seat for dining at home, but he doesn’t need to hear anyone going through a checklist of all of those needs.
If he laughs at our jokes, chances are he’s understanding all of the other stuff that is said around him too.