Awesomeness

You may not be a fan of flash mobs, but if you have a loved one who is differently abled, you'll like this one! (ummm grab a tissue.)

What I Wish You Knew

You. Yeah, you in the store check out line. Not him, you. I'd love to talk to you right now. I can see by your long stares you have questions. You're trying to figure us out. I wish we could stop life right here so I could tell you our story.

I want to tell you that you don't need to feel sorry for me. Our children are beautiful and we love every single extra chromosome that resides in every cell of their body. I know it's hard for you to believe, but some of them were chosen because of it.

Our life is not hard. Really, it's not. And to be honest, if you asked me which of the kids is the most challenging to raise, I would say the biological one. And no, I won't tell you which one that is. (Look close, you can probably figure it out!)

No, we are not saints. We aren't miracle workers either. I just walked into a building one day and we both knew right then we had to do something.

Why do we do it? I can probably give you 100 reasons. Instead I prefer to ask "Why wouldn't we?" You'll have trouble coming up with any, and the ones you do come up with might fit YOUR family, but they won't fit mine. "The benefits outweigh the risks" applies to us.

Hey you. Yes you...I saw you watching us. I saw you do a double take. I even saw you peer around the end of the isle at us. I recognized your looks. I used to do it too! When my oldest with Down syndrome was a baby, if I saw a family who had a child with DS I would stalk follow them.  But Angela didn't look like she had DS, or if she wasn't with me, it was hard to know how to start a conversation. But yes, I saw you. And yes, I recognized your attempt to go unnoticed. I want to tell you, you're gonna be ok! Your baby is just that...just a baby. Love that baby because before you know it you'll be me, walking through Target discussing boyfriends with your teenager. And yes, you'll get there. You'll survive this time in your life.

Our house is no different than anyone else's. If we need more of anything it's a better sense of humor than most parents because you have to be able to laugh (sometimes only in your head) at some of the things that are said and done around here. Who else has rules like, "No invisible people allowed upstairs." or "No dangling in the living room." And I really don't know anyone else who says, "Tongue in." as much as I do on any given day.

I wish you could join us at our house. You just might leave realizing your life priorities have changed.

The Looks We Get

Angela, Axel, Asher and I walk into Target together. Angela usually takes the lead, Asher holds my hand and Axel walks about 10 feet behind me. I constantly say things like, "Angela, wait for the rest of us. Can you walk with us? Axel, you need to walk faster. Can you walk with me? Asher, tongue in your mouth."

You walk in right behind us. As I pull a cart from those parked at the entry, I turn to check the whereabouts of my kids and catch your eye. I can see you trying to figure us out. Your eyes first go to Angela who is probably in a mood and you can feel it,  then they scan to Axel who looks a little bit lost. He sees you and says, "Hi!" Your eyes then move to Asher...does he or doesn't he? There is something different about him but you can't quite decide what it is.

Once you've checked over my kids your eyes meet mine. I can see your questions, mostly because they've been asked of me plenty of times. Let me answer the 20 most common questions for you, in no particular order.

1) Yes they're all ours.

2) No, we don't have a group home. (this one cracks me up as I can only imagine the questions that get asked of my friends who have far more kids with special needs than I do!)

3) Yes, they all of Down syndrome.

4) Yes, I'm sure.

5) Yes, even Asher.

6) Yes, really.

7) No, I don't have any trouble "managing" all three of them alone. We don't have any trouble parenting them either.

8) Yes, we knew they had Down syndrome when we adopted them.

9) Yes, we chose them based on that diagnosis.

10) No we are not special parents.

11)  Yes, you could do it if that's what God wanted you to do.

12) No there is no cure for "it".

13) Yes she is really 15. Yes he's really 11, and yes, he is REALLY 7. (Why would I make this up?)

14) No, we don't know if they will ever talk.

15) I don't know what he just signed to you because he made it up. He's a genius like that.

16) They came from Serbia.

17) Serbia, not to be confused with Syria or Siberia.

18) No, they did not know English when we adopted them. See #17.

19) Yes, I had to travel to Serbia to get them.

20) The place God has waiting for us in heaven is no more special than yours. It was planned before we was born, just as yours was.

Something is wrong with our kids

All three of our youngest kids have some sort of virus. We have no idea what it is. Here are the symptoms:

1) exceptionally pleasant upon waking
2) offering to clean various things
3) voluntarily putting their dishes in the dishwasher...at the same time...without arguing.
4) helping Asher with things without being asked.
5) going to bed when asked the first time. As if they wanted to.

We're pretty sure this is just a 24 hour bug and nothing to get too excited about. We're keeping a close eye on them to be sure it doesn't get any worse. Angela seems to have it worse than anyone, with Axel a very close second. I think Asher just has a light case, probably because he mostly watches everything they do and imitates it, so this virus would be no different, right?

To Moms of Boys

If you have a boy with a disability who EVER uses a public restroom, well Dave over at Rolling Around in my Head has a blog post you should read. I'm glad Dave posted about this, because I've had similar concerns about my own boys (thanks to Dean telling me it's wrong!) but I have no idea how to fix this.

Well, Axel is petrified of public restrooms and won't have anything to do with urinals, so he chooses to sit when at school, a restaurant, etc. However, when he's at home and he does stand, his pants are at his ankles. Drives me crazy and no matter how many times we tell him, old habits are hard to break. Habits that he came to us with so I'm not taking the blame. LOL

Then there is Asher. He's been out of diapers for several weeks now. Guess what? He refuses to pee sitting down! He will ONLY go standing up. Didn't you know sitting is for pooping only? He needs supervision when standing because he still doesn't get the whole "aiming" thing but it's not something I want school staff helping him with. Also, do to some..umm...anatomical differences,  combined with the motor skill of an 18 month old, just opening the front of his pants isn't really an option. Even at school they bring him to the toilet to sit but he won't' go.  Not sure what I'm going to do to solve this problem.

Anyway, head over to Dave's blog and have a read.

Oh, while we're on the topic, can I bring up a pet peeve of my own? The word "potty".

Mom's, I'm telling you, PLEASE stop using the word "potty" with your kindergarten and school age kids! In school the world "potty" is for babies. Big kids say, "I need to go to the bathroom." I'll never forget working in a 1st grade classroom when one of the boys came running up to the teacher, "I need to go potty!" Every child eye in that room was on him at once in a "You just said WHAT?" kind of way. He turned back to the teacher, "I need to go to the bathroom!"

There was another time, same building the next year when Angela was in 2nd grade. My class was in the hallway transitioning to somewhere when we ran into Angela in the hallway with her aid, when her aid turned to her for all the kids to hear, "Angela do you need to go potty?"

Really????  In school...to a 2nd grader???? As if the kid doesn't stand out enough without someone talking to her like she's 3?

 I think it's a mistake a lot of moms make without realizing it.

Ok, jumping down off my podium for the day. ;-)

The Store

It's never happened to me before.

Asher and I were in the store check-out line. In front of us was a young mom with a boy around 7 years old. The boy turned and saw Asher standing behind him. "Hi!" he said to Asher.

Asher immediately waved "Hi." back.

"Hey! That's now how you say, hi!" the boy said. "Open your mouth and say hi!" he demanded.

I quickly responded, "That's how he says hi. He talks with his hands using sign language."

His mom jumped in, "See? You learned something today. You learned how to say "hi" in sign language. Isn't that cool?"

The boy didn't look very happy with our response. He looked back to Asher. "You're supposed to talk with your mouth. Just open it and say hi." His mother, looking mortified, roughly turned him away as she leaned down and whispered a lecture in his ear.

I looked down at Asher.  At that very moment I wanted to do two things at once. First, I wanted to get in the kids face and tell him some things are better kept in your thinking bubble. Then I wanted to leave. Forget paying for our stuff because at that moment I was feeling tears well up in my eyes.

A 10 second exchange with a little boy brought me to tears. In nearly 16 years of parenting kids with Down syndrome I've never had anything like this happen to me. But wait...it didn't happen to me, it happened to Asher! That's what upset me so; that it happened to Asher. The boy didn't even say anything mean, really, but I instantly pictured Angela walking through her high school. How often does this happen to her? How often do people give her a hard time? And Axel? Does this happen to him? So what that neither Axel or Asher would understand the words the boy used, they both certainly understand the tone behind them.

We didn't bolt from the store, but when Asher and I did get to the car I gave him a big hug. "You're perfect Asher. Everything about you is perfect."

Human Rights in the Balkans

The US State Department issued their assessment of human rights in the Balkan region. You can read the full article here.  Sadly, it says nothing about the care of orphans in the region, something that his a HUGE issue! Ok, I am not a member of the US State department, but to me, apprehending war time fugitives is clearly important, but what about the children who are alive NOW, and not getting the care they need?

Hopefully there is much more to it than what was published in this article.

The Boy from Baby House 10

If you haven't read this book, I highly suggest it. Dean and I both read it. Tomorrow night on Dateline "The Boy" is going back. Back to where he came from, for the first time. Check out the trailer.

What Would You Do? TOMORROW!

The Weds, May 19th segment of "What Would You Do?" is a MUST WATCH! Here's the storyline:

People with intellectual disabilities have more professional opportunities than ever before, but they still face ignorance and even bigotry. Working in cooperation with the National Down Syndrome Society, an actor with Down syndrome poses as a bagger in a grocery store. But it doesn’t take long for an ignorant customer – also an actor – to start protesting. “What’s the matter with you? Are you retarded?” he complains. Will unwitting observers, waiting their turn at the cashier, take a stand against this abuse or will they ignore it?

School Denies Access to Service Dog

Meet Adam and his dog Kita. Adam has Fragile X Syndrome, and his service dog Kita helps him get through live. Federal Law protects Kita's access everywhere else, but school wants a court order before they allow access!
http://www.freewebs.com/adamsgift/index.htm

Kita and Adam are still in the bonding process, and have only been together for a few weeks, so they're still "learning" each other. Kita does several things for Adam, one of which is interrupting self injurious behaviors. She also alerts to impending seizures. School says "But we have other students and teachers who are allergic to dogs." And, I'm sure they do. Those same people will run into service dogs out in the community too! They probably haven't even noticed the service dog laying under the chairs at a neighboring table last night when they went out to eat, or the dog at the ball game, or in their church. Service dogs don't have to be big! I've seen King Charles Spaniels as service dogs, and most people don't even realize the dog is there.

The funny thing is, if Adam were blind, school wouldn't deny the dog, because the dog's services would be obvious. But when people have disabilities that are hidden, it can be difficult to see what service the dog is providing. It really shouldn't matter. It's not up to the general public to decide weather or not a person's service dog really provides a service. Once the dog has had the necessary training and testing, and been deemed "service dog", nobody else gets to say, "But I don't think he really needs that dog, so we're not going to allow it."

Funeral

Tomorrow we're attending the funeral of Dean's cousin's son. I never met 18 year old Eric, but I know I will spend this entire funeral crying. (obituary here)

Eric was severely disabled, and required a lot of care.

The day Eric died, as soon as Dean told me I was in tears for his mother. Dean was a little surprised that I was so upset. After all, I'd never met Eric, and have only met his mom once. So I tried to explain to him what I was feeling.

A few years ago Angela had a classmate named Spencer who was 8 years. A big kid who towered over 5 year old Angela, but Angela was his favorite. She could get him to do anything! At 8 years old Spencer functioned at about a 6 month level, was the height of a 12 year old, and weighed about 150 lbs. But he had one saving grace, and that was he was able to walk, even if it was with a lot of support. It made getting him from point A to point B much easier.

One day at school Spencer was very irritable, kind of whiny. Mid morning he started running a temp so his mom was called. They made the agonizingly slow trip to the car, then headed for home, but on the way he started seizing. Mom reversed course and headed for the hospital just a couple miles down the road. (this was before everyone had cell phones.) But Spencer's heart gave out before they made it there.

At the funeral, when I went to give his mom a hug, she pulled away, hands on my shoulders and looked me in the eye. With tears streaming down her face she asked me, "Now what? What do I do now? For the past 8 1/2 years every waking moment has been spent caring for Spencer. I'm Spencer's mom. I'm not Debbie, I'm Spencer's mom. What do I do now? How will I find my way?"

So tonight, as I figure out what to wear for the funeral of a young man I've never met, I can't help but put myself in the shoes of his mom. Naturally I would be upset if anything happened to ANY of my kids. Angela, though, is different. I practically know every cell in her body. The most I know about my other kids' genetic make-up is that I was their mother, and Kevin was their father. I have seen Angela's internal organs. I have nursed her through almost every ailment known to Down Syndrome. I have spent countless hours helping her to achieve what others take for granted. Although Tyler is back home at the moment, he is self sufficient. Angela is not. I would venture to say that 90% of my being revolves around Angela's care and nuturing.

I am "Angela's Mom".

Over the past year I have started to find "me" again. Just little things here and there. I'm afraid of the "what if" with Angela. I know that if something happens to her, I'll be lost for a long time. I guess it's kind of inevitable when we have kids who require a bit more care.

If you could, please remember Eric's parents in your prayers, especially his mom.

The Mother at the Swings

This was shared with me on the Down Syndrome Listserve. Beautifully written.

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home
drawing cartoons with my husband and I'm swinging my six-year-old son
Evan at the park. Evan laughs and giggles and with each wide arc of
the swing, his smile grows ever larger. The mother next to me smiles
herself and says, "Boy, he really loves that, doesn't he? I mean,
kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to
swing isn't the same reason her daughter, in the swing next to us,
loves to swing. My son loves to swing because he is blind and non-
verbal, because he has what is termed "sensory integration
dysfunction" and requires enhanced "vestibular input." Swinging gives
my son the kind of stimulation other kids, those who can see and talk
and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs
louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's
not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how
high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he
definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a
pound. His twin sister died four days after birth when we removed her
from life support. Evan was hospitalized for six months and came home
blind, with feeding difficulties, chronic lung disease and global
developmental delays. Soon after that, he developed a serious seizure
disorder and was on medication until his fourth birthday. He did not
walk until he was five, still does not eat anything other than pureed
baby food and formula from a cup, and has only a word or two --
variations on "muh muh" -- which he uses indiscriminately for "more"
or "mama" or "open." I have watched my friends' newborns become
toddlers and school-age children who can walk and laugh and talk and
read, all while my son continues to function at the level of a two-
year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow
only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a
handout, a road map for the potential reactions of friends and family
members to our new status as parents of a super preemie. Potential
support people came divided, according to the handouts, into the
following categories: the rocks, the wanna-be-theres, and the
gingerbread men. It warned us that people we might think were "rocks"
could unexpectedly turn out to be "gingerbread men." Just like the
story, they run, run as fast as they can from you when they hear of
your baby's birth.

I quickly found that the guide was right, that I was supported by
only one or two rocks, and that the rest of my friends and family
members had become gingerbread men. As Evan's disabilities became
more obvious, after he left the hospital and in the time that
followed, I found new rocks and said goodbye to the gingerbread men.
And I found a new category for the characters in the social worker's
handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her
observations, and why she pretends there is nothing different,
nothing dissimilar about her child and mine. All kids love to swing.
The mother at the swings would like for me to tell her what it's
like, how my son is different, and how he is the same. She wants to
know about the cane he uses, and the challenges of having a non-
verbal child, and how I manage to understand my son and communicate.
She'd like to ask, What does his future look like? And How are you
with all this?

She wants to know but she doesn't know how to ask. And so she tells
me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the
swings, and how to say it. To reveal the truth, graciously. To let
her in and help her understand. To tell her that yes, all children
love to swing, and my son loves to swing and the reasons are both the
same and different. That it's hard to watch her daughter, with her
indelible eye contact and winning smile, and not mourn for what my
son can't do. That some days my grief over my son is stronger than my
love.

It has taken me even longer to appreciate the mother at the swings,
to know that she and I have more in common than I once thought. To
know that her curiosity is a mother's curiosity, one borne out of
love and tenderness and a desire to understand a child, my son, one
who happens to be different. That she will listen and sympathize when
I offer my observations. That her compassion and thoughtfulness mean
she will take the knowledge I share and use it to understand other
mothers like myself, some of whom could be her neighbor, her cousin,
her sister, her friend. And, finally, that she wants to know so that
she can teach her own child, who also loves to swing, how to embrace
and treasure what makes us all different. And the same

Creative Income

Some people need to find "creative financing" in order to make big purchases...like a mortgage. I, on the other hand, needed to find "creative income" in order to survive.

When Angela's dad and I separated, I was working full-time as a sign language interpreter in the educational system. I had 3 kids with me, and while things were tight, they were manageable. Then two years later the boys decided to move to their dads, and Angela and I decided to move to Eagan and start our new together with Dean. We moved September 1st. On September 6th Angela and I were on a bike ride with her new "kanga bike". She was loving this, and laughing hysterically when suddenly the ground came rushing at us and we landed in tangled mess. Angela landed with her belly making a loud "SLAP" noise on the pavement. I picked her up, brushed her off, and saw she only had some minor scrapes on her palms but was otherwise ok.

Later that night as I was helping her get her PJ's on I noticed her old Nissen scar was bulging. It was just a tiny bulge, but I knew from Angela's history with wounds that this seemingly small thing could snowball right before my eyes. The next morning I brought her into her surgeon who said, "Really, I think it's ok. Yes, there's a tiny hernia there, but I'm not touching it unless it becomes infected or something, and that's pretty unlikely."

"You do realize this is Angela you're talking about. The child who is world renown medical rule-breaker?" I asked. He laughed. I said, "See you in 2 weeks. I know we'll be back here around that time."

Days later the "small hernia" was fire red and she was burning up. She was admitted to the hospital for the first of many stays. Finally Anagela went into the hospital the first week of November, and stayed until the end of February. During that time she had 3 major surgeries and had an open surgical wound about 6 inches long on her belly. It was not a good year! I would sleep at the hospital in Angela's room, then in the morning use the parent showers to get ready for work. The commute to Chaska wasn't too bad since I was going the opposite way from the rest of the world. After work I'd stop home, grab a new change of clothes for the next day, then head back to the hospital.

Angela got very sick. She had an old surgical scar that deteriorated, requiring numerous surgeries, and a winter of IV antibiotics in the hospital. It was really tough to work during that time. My position wasn't one that was easily filled by a sub, even on the rare occasions one was available.

There came a day, sometime around the beginning of January, when I realized I just couldn't DO this anymore. Her dad had only been to the hospital once to give me a break. He stayed overnight, but spent the next day complaining how he didn't get any sleep there. (Gee..really? You mean it's hot like a Hilton?) There were a few times Angela was able to come home, but within a couple of days she'd be back into the hospital via the ER needed to go back on IV antibiotics. With my sick days long gone, my employer was getting impatient, I was exhausted and desperate to find some type of solution. Finally I called the MN state dept. of human services. "Surely there is some type if funding....somewhere...that allows a parent to be a paid caregiver?"

Whatdaya know!? You bet there was! A rarely access funding source called a Consumer Support Grant. It took a month to figure out the particulars and get the REAMS of paperwork filled out. Finally on February 15th I went on Family Medical Leave, and became a stay at home mom, able to spend my whole day at the hospital helping Angela get better so she could come home.

The end of the month Angela DID come home, but it would be a long time before she could go back to school. She still had a large open wound that required frequent dressing changes. Well, that and the fact she was just plain exhausted. Instead she received Homebound Services (where a teacher comes to the home) which she wasn't exactly thrilled with. Finally the last 6 weeks of the school year she was able to go back 1/2 days. Now she was in a new school with kids she had never yet, but she thrived on it.

That was 3 years ago. Angela is still not able to attend school full-time. Medically she's much better, but physically she is easily drained, and by 1:30 is asleep in a beanbag chair. So she comes home, (but never sleeps of course). Angela was recently placed on a TBI (Traumatic Brain Injury) waiver that still allows me to be a paid caregiver, but with a wage we can actually live on.

Over the years I've learned a lot about funding sources in Minnesota, and I can tell you as long as Angela is under age 21, we'll not be leaving the state! There are just too many funding sources available here that you can't find anywhere else in the nation. You can't just GET them, as they each have their own qualification requirements, but if your child qualifies they can be the difference between having a roof over your head!

If you're in Minnesota and looking for "creative income" sources, you might want to take a look here and see if your child or your family qualifies for any of these programs.