Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"
Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts

Monday, December 17, 2012

Dressing for the Weather or the World?

I originally posted this in 2008 when Angela was 11 years old. (she is now 16!) We were in the midst of preparing for her Make A Wish trip. Since the Sandy Hook school shootings, in which a friend of mine lost year 6 year old daughter Charlotte, it takes on a whole new meaning for me. A good reason for a repost.

It's a rare morning when I'm up before Angela. She usually beats the sun and the roosters. Today was one of those rare mornings, but I didn't beat her by much...minutes at most. All was quiet in the house as I lay in bed enveloped in my cocoon of blankets, and the giant fluff ball next to me that was Zurri.

And then I heard it. The smallest voice, rehearsing her day, naming all her friends. I got up and stood quietly, motionless, outside her bedroom door. Peeking around the corner I could see her head was under the blankets. In her quiet croaky morning voice she chanted, "All my friends. Yep, all my friends be there. A party for me. Drew, Monica, Daddy, Desi, Grandma Spring, Mom, Dean, Noah, Tyler, Bryon, Mrs. Hubbard. Yep...all there...for party...It's a fun time my party. Should I wear a dress? No...Should I wear a fancy shoes? No...Stripes. Yep, that's right. I'll wear my stripes. My Florida party...all my special people will come."

She got herself up and dressed, then came to find me for some breakfast. "Mom? What I wearing to my party?"

As I envisioned the mountain of striped shirts in her dresser, I answered "I don't know Angela. I hadn't really thought about it. But, since stripes are your favorite I bet that would be a good choice, and certainly one we have many options for."

Time to get dressed for the bus. We're having frigid temperatures here in MN, so every possible piece of outdoor clothing is required. She struggled with her snow pants a bit, the ones that are threatening to fall apart before the end of winter when you can't find them in the stores anymore. She pulled on her boots, then her jacket. She's still not able to zip, so I bent down to help with that. I pulled up the zipper, then tied her scarf around her face. She pulled on her mittens as I slipped her "Cars" backpack over her shoulders. (she won't have anything to do with girly backpacks, no she wanted Spiderman or Cars!)

I opened the door to send the pink puffball out into the biting wind, but at the last second she turned, "You forgot my kiss mom!"and turned to face me with an exaggerated pucker, complete with crusted toothpaste on the corners of her mouth.

As I watched her waddle down our long, steep and icy driveway it occurred to me I wasn't just dressing her for the weather. I was dressing her to protect her against the elements of the world. I did it with all my kids, just as all parents do. But with Angela, there are some things in the world that she's a bit more vulnerable to. So I prepare her for them as best I can, giving her the protective layers to shield her from the bitter cold that the world can sometimes dish out to kids like her. Those who are different from everyone else, who struggle to learn what might come easy to most. I have spent 11 1/2 years praying over her, that the Lord will show her the right way, to the parts of the world that will welcome her, and love her for who she is.

She stands there in the wind, independent of me, well out of my protective reach, singing the songs of girlhood, ready to jump into the world with both feet. Her spirit screams "I'm READY! I can do it!"

Thursday, May 17, 2012

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.

Monday, April 30, 2012

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.

Sunday, April 29, 2012

Pre-Adoption Straight Talk

People frequently contact me with questions about adopting a child with special needs. I'm thrilled there are so many people who are interested in not only adding to their family, but specifically a child with special needs. Here are some things to consider when you're making your decision. This post is not meant to scare you out of adopting, or to intimidate you. Yes, I'll be pointing out many of the negatives in adoption. This post is meant to give you things to think about before adopting, laying the groundwork to a successful adoption experience.

Experience: Many people who adopt kids with Down syndrome or other special needs already have biological children with similar diagnosis or medical needs. They "get" what it's all about and have determined they can manage doing it all again. If your family is new to the world of special needs you need to do some research! If you're looking to adopt a child with Down syndrome, there are many resources on the net, like the National Down Syndrome Society , the National Association for Down Syndrome  or the  National Down Syndrome Congress where you can read through some of the common medical issues. (You can find similar organizations for just about any disability group or medical condition.) You can also read through the 2011 American Academy of Pediatrics abstract on Health Supervision for Children with Down syndrome, which will give you a a pretty good idea of what's involved for routine care for kids with DS. Ok, now that you've got your reading done, it's time to head to some events! Check out the calendar for your state or local level Down syndrome associations to see what's gong on. Meet the families and self advocates who live with Down syndrome every day. You could also attend a Special Olympics even near you. ENJOY your time!

Location: Ok, I have to say this one really gets to me. Several times, particularly in the past year, I've seen families adopt kids who need a high level of medical care but they live in very rural areas making access to medical specialists difficult. If you don't mind doing all the driving for what can become many trips, for many years, that's awesome! Unfortunately I've seen a few families recently who have denied their child necessary medical care because it's too far away and they don't like to drive in the big city. Really? You knew this going into the adoption! Checking out the logistics needed before you adopt can save you a lot of stress later down the road. If there is an international adoption clinic near you, they can help you locate specialists who are used to dealing with the unique care needed for many post-institutionalized children. Check out the children's hospitals near you. Do they have specialties? (we have several children's hospitals near us, one is the "go to" place for heart defects, another for orthopedic treatment, craniofacial care, etc.) If you have a child identified, are there specialists near you who are suited to meet the needs of that child? Are they taking new patients?

Health Insurance: What kind of health insurance coverage do you have? Will it cover all the things your new child may need? What is the yearly deductible? Is there a lifetime max? If so, how much is it? Ask families of children who have similar needs how much medical care of for their children costs.

Schools: Please, before you adopt, check out your local school district. A district may be awesome for typically developing children, but really leave a lot to be desired when it comes to special education services! Look into the different options of inclusion, mainstreaming, or self-contained classrooms. What is the philosophy of the district you're in? What do YOU want for your child? Will your child be able to attend your neighborhood school or will he/she need to be bussed to the other side of the city our county? Keep in mind that most services (PT/OT/ST) provided in school are the bare minimum and you may find you need to add private services. Are they available in your area? You may be planning on homeschooling your new addition, only to find out his or her educational needs are beyond you. Will you be comfortable seeking public education if that happens? If not, what are your other options?

Advocating: Are you prepared to advocate for your child to make sure his or her medical and educational needs are met even when you've been told "no" by the professionals for various things? Are you prepared to speak up the first time your child is called a horrible name, is mocked or made fun of?

Support system: What kind of support system do you have in place? How does your extended family feel about the concept of you adopting a child with special needs? Many say, "It doesn't matter what they think." only to find when it really happens to them, it DOES matter, and it hurts to say goodbye to family and/or good friends. All parents need a break from their child. Do you have anyone who can care for your child(ren) so you can get that break?

Time: When you bring your new child home, how much time will you have? If both parents work full-time, are you able to take maternity/paternity leave to be home with your new child during the bonding process? If you need to seek childcare, are there places near you that have the ability to care for your child's needs, including emotional/social/medical?  Bringing home your new child, particularly a child with Down syndrome or other significant needs, requires a lot of medical appointments right off the bat to sort out all the things which have not been addressed until now. (Asher, who only had a few issues, had 16 doctor appointments in the first 8 weeks home, a surgery w/hospital stay at 3 months, and a jazillion follow up appointments. Axel had no known medical issues other than needing dental work, yet ended up having a life-threatening condition requiring MAJOR surgery out of state, followed by months in a halo, and we're still doing follow-up appointments out of state.)

Are you prepared in your head?: Are you prepared to care for a child whom you have no biological connection to? Are you prepared to NOT love the child when he/she is placed in your lap? How do you feel when the most annoying neighbor kid visits your house? Some days your newly adopted child (particularly if they're older) will feel like that kid. Are you prepared to parent a child who may not like you? Don't expect that this child will suddenly like you, particularly when you are taking that child away from everything he/she knows. If you have parented step children, you already know these feelings and know weather or not you can handle it. If you are prepared for it, you will recognize when you're feeling it and be able to work through it. If you're not prepared for this, it can catch you off guard and be a very scary feeling.

I know there are other adoptive parents reading this post who may have things to add. Please do so in the comments. Again, I don't want to scare you away from adopting, but to give you some things to think about before you adopt.

Sunday, April 22, 2012

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 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?

Easter/Spring Break

Trying to catch up a little bit with this post, so lets go back to Spring Break which for us was the last week of March. The kids weren't very happy that I spent most of the week sick with strep (again! Know any adults who've had their tonsils out? Mine need to come out. YUCK!) so we did a lot of this:

And this (in pajamas!) 

And Dean did some more of this

Next up was my niece Tia's baby shower. So excited to see her first baby, a girl, arrive in just a few weeks. Angela was excited for an event that was only for "ladies" and not little girls. I bought this leather jacket eight years ago when I was skinny enough to wear it. Now, other than the sleeve length which needs to be shortened by about 5 inches, it fits Angela perfectly. 

Then came Easter. Because we weren't sure if the kitchen was going to be done in time, we were didn't decide until the last minute if we'd be having our Easter meal with Dean's family here or not. In the end we did host it, and had a really great time with everyone gathered in the new kitchen. We didn't decorate eggs this year, or even get around to buying the stuff for it, or even any candy!

This was the first time we've had a large group of people over since Asher joined our family. He wasn't sure what to make of it except that he was VERY excited and sure that everyone was there to pick him up! Every time someone came to the door he went running with his arms up, but everyone was very good about telling him no, and shaking his hand instead. Finally he stood in the middle of the room, arms up in the air as if to say, "Will someone please pick me UP already?" So I did, and he seemed happy with that. ;-)  Even though there was no easter egg hunt, and no candy, Dean's aunt brought scented bubbles for the kids. They had blast with their older cousins out in the yard blowing bubbles and generally being silly.

So, that was our Eater and Spring break all wrapped up into one post. Now it's time for summer, right?

Wednesday, April 18, 2012

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 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. ;-)

Tuesday, April 17, 2012

After School

A couple weeks ago I started school. I was very excited that first day. Do you know what I've learned? Every day is like the first day all over again! Now that I know how fun school is, I can't wait to go every day.

School is a very long time. Three hours! When I come home I'm really tired. While mom makes my lunch I like to look out the kitchen window and watch the birds. Somedays I'm too tired for birds...or lunch.

Yesterday I came home and wanted to lay by the window, but remembered there was a more comfortable place. The couch looked MUCH better than that hard bench! I climbed up and made another discovery. If I pull the blanket over my head like this, nobody can see me sucking my tongue!

I heard Mommy calling me, "Asher? Asher, where are you?" 

I peeked out from under the blanket. I'm right here Mom!


Today when I got home Mom had my lunch all ready for me. I'm so glad, because it was tough to keep my eyes open while I ate. As soon as I was done Mom said it was nap time. I sure love my nap.

Thursday, October 28, 2010

Failing as a Parent

I have failed my kid miserably, and she is only 14. Can I still fix it?

If you have HBO, have you seen the documentary Monica and David? If not, you HAVE to check it out! It's about a couple with Down syndrome who have gotten married, and are learning about living and loving together, and their family learning to let them do just that. It was fascinating for me to watch. And, I have to admit, some parts were hard for me to watch to. Like their wedding night when the hotel room door closed behind them. I told Dean, "That is where I would want to put my thumb in my mouth, my fingers in my ears, curl up in a fetal position and hum in the corner." Really, when that day comes for Angela, I'm gonna have a hard time with it.

Anyway, this movie was a slap in the face of reality for me. Monica is a bit obsessive about some things, as Angela can also be sometimes. Ok, a lot of people with DS have some...ummm...obsessive tendencies. Several times they showed Monica making her bed. As she made her bed, all I could think of was the mess Angela's bed is left in each morning and the fact that Angela is perfectly capable of making her bed, I just don't seem to have the patience for teaching her how to do it. It's not that I haven't tried, it's just that our sessions have not turned out very well. One of us always ends up irritated with the other. Oh my, Angela and I are soooo much alike!

In other segments of the movie, Monica and David are doing chores together, like taking out the trash. (It was pretty cute to see them bickering over some small detail.) But the scene reminded me of my friend Tamara's recent blog post about her son Shawen doing chores. And that is when I realized that I have failed Angela miserably.

You see, although Angela has four older brothers, she has been very much an only child since they moved out when she was 7. (well, except for the revolving door stuff with Tyler.) When she was little, and we pretty much did everything for her, and since she was the only one here, it's been pretty easy to just keep the same patterns in place.

Some things have changed. Like, she showers independently and stuff like that. But she can't make a bed. She doesn't take out the garbage, or do any kind of household tasks unless asked to, which is rarely. Occasionally she lets the dogs in or out, and we're met with a huge attitude when we do tell her to do it.

I have news for Angela.

The sh** is about to hit the fan.

There is a new brother coming, and I'm pretty sure he is NOT going to be a happy camper when he comes. He is loosing a family, and a foster sister who he is bonded to. I have no idea how independent he is, but I'm going to assume he's not at all and hope I'm pleasantly surprised.

You know how girls, when the hit the age of about 7 or so, start to mother everything? Suddenly they're very into mothering their nieces and nephews, etc. Well, Angela just started hitting that developmental stage about 6 months ago. I think that's interesting since I've been saying for awhile that cognitively she's very much 7-ish. All of a sudden here came this very 7-ish behavior! Prior to that she was really pretty rough with little ones. We're hoping we can use that "mothering" thing to our advantage when Axel comes home. Hey, it's my blog, and I can be delusional if I want.

Anyway, we've been talking to Angela about how she's going to be the "big sister" and how big sisters do things themselves because when moms have new babies, moms have to take care of the new baby. Bringing Axel home is going to be a little bit like bringing home a new baby because he's going to need lots of attention. We talk about how when she was born, she had to go to lots of doctor appointments, and her brothers had to come along. Most of Axels visits will be while she's at school but she'll be able to come along to some of them. (she was thrilled about this, because she LOVES to come to the doctor when it's my turn and not hers! LOL) Axel will need someone to tuck him in at night, and read him a story, and teach him how to be a big kid. She can help by showing him how big kids act, and do thier CHORES like a big kid. And do their HOMEWORK like a big kid, etc.

We struggle to find ways to explain all of this to Angela in ways that will be fun and exciting for her, and not make her resentful of the intruder who is about to descend upon her empire.

Tuesday, December 23, 2008

The Mom Song

I know I posted this sometime last year, but its too good not to share this newer version! ENJOY!

The Mom Song from Northland Video on Vimeo.

Tuesday, May 27, 2008

How Do I Help Him?

When the phone rings at midnight, it's never a good thing, so when my phone rang all kinds of horrible thoughts came rushing into my head. Is Mom ok? Dad? My sisters? Brother? Dean's family members? All in the few seconds it took for me to get to the phone.

I couldn't understand the voice on the other end of the line. I heard sobbing and "Mom?" squeezed out between the sobs, and thought it was T, which didn't make sense since T was downstairs AND I was just woken up from a sound sleep.

As I came to I realized it was N on the phone. He couldn't talk, he was crying so bad. Was he in jail? Was he hurt? Why was he crying like this? He squeezed out, "It's K..." (his girlfriend's name)

"What's wrong? Is she hurt? Are you hurt? Please, take a breath and tell me what's wrong. There...just breath in...and out....and in.... ok?"

Once he caught his breath he told me of the horrible way his girlfriend of 3 years broke up with him.

What do you DO? What do you SAY to your soon-to-be 21 year old son in this situation? I closed my eyes, and begged God to put the words in my mouth.

And I thanked God that N chose to call me...his mother....when he was at his lowest of lows. I rarely hear from N. Only when I call him. I get indirect messages from T, but other than than knowing where N is living, I'm in the dark. Every night I pray that God keeps him safe. That N knows he can come to me any time. Tonight he did, and I didn't know what to say.

There were lots of things I WANTED to say. Like, "Hello! She's only 18 and you've been with her for 3 years! She needs to see the world and so do you!" or the whole, "Be glad she ended it now BEFORE she got pregnant!" But none of those things would have been appropriate to he's hurting.

N suffers from Major depression, and suffer he does. He must have said 20 times, "She's all I have. I gave her everything I could, but she's all I have. Without her, I have nothing. I AM nothing." Statements like that, while pretty normal for his age and the situation, scare me to death given his history. I told him I know how it feels to give someone your heart, only to have them stomp on it, and throw it back in your face. N has seen this happen to me, so he knows I know. I told him to remember that he can't control K's past. That the example she has lived with all her life, even though she swore she'd never be THAT kind of person, is exactly who she is right now. It's not completely her fault, because she is the product of her environment, but she did make a choice...and that's the direction she chose to go. I said lots more...trying desperately to grasp for anything I could think of. I tried not to say things that I would have hated for someone to say to me. I really suck at this kind of stuff! I spent an hour on the phone with him, wishing they'd given lessons about this stuff as part of the birthing classes we took. My friend would have a name for this class, something like, "The art of breaking up 101" or something like that.

I doubt N heard anything I said. But what he did hear is that his mother loves him. That no matter what happens, he can call me, anytime, day or night, and I'll do my best to help him. That mom's can't make the hurting stop sometimes, but they do have ears, and they can listen.

Tonight I'm praying that N heard me listening, and that when he cries himself to sleep tonight, he'll know his mom loves him.

Sunday, May 11, 2008

Mother's Tears

It's not until we become mothers ourselves that we understand the tears a mother cries for her children.

Noah, my firstborn. As he was placed in my arms and I felt, for the first time, the joy only a mother can feel. He is the only one who got those very first mother's tears. They carried with them a bond only he and I can share. I cried tears of fear when, as a toddler, his finger was amputated in an accident, and tears of anguish as I handed him over to the surgeon to have it re-attached. When he was two I cried tears of delight when I found him dragging wet worms around on the driveway, and when I asked what he was doing he told me, "I'm painting!". When he was 12 I cried tears of "Why him?" when we were told he'd need to give himself shots every day, and tears of frustration when at 14 he suddenly refused to do them anymore. I cried tears of sorrow for the teenager who ran away from home several times, and tears of gratitude when he returned safely. There were the tears of pride when I saw my handsome boy dressed for prom, and more at graduation. He'll be 21 soon. My tears for Noah will continue as I watch him struggle his way through adulthood, as I'm sure my mother still cries for me.

Tyler, the middle child. I spent 3 months crying when Tyler was born. He came into this world confused and angry, as if he was upset about having been ripped out of the nice warm cocoon he'd had all to himself. My tears for Tyler were usually in frustration, not knowing how to help him, how to make him feel comfortable in this world that required touch. Tears of sorrow for the boy who struggled to be understood and would repeat himself over and over again until we finally were able to put together what he was trying to say. There were sad, helpless tears as I held him down for repeated blood draws to figure out why his blood cells were different from everyone else's, and tears of apology when I was able to comfort him afterwards. There were lots of tears of joy for Tyler too! Like when he was finally able to say his own name, and when he walked on his feet instead of his knees. Tears of pride at his ability to understand words far bigger than him, like "bioluminescence". There were the tears of fear when mental illness reared it's ugly head and we learned more than we ever cared to about the world of psychiatric care. Really though, those tears of fear and frustration that flowed from me for Tyler were prayerful tears, asking God to show me how to help my son. Now at 19 I see a wonderful young man with a heart of gold. Caring and thoughtful, he holds a place in my heart that no other can ever have. I know I have years of tears for Tyler ahead of me, but for now, when I cry for Tyler, I cry tears of pride as I watch this amazing young man.

When Angela was a baby, I cried many tears for her. Tears of "Why me? Why HER?". Tears of sorrow as we were given bad news over and over again. Tears of fear as I handed over over to the surgeon time and time again. At 8 years old, when I cried at her first her track meet, she asked me, "Why crying mom?" How do you explain to a child you're crying because as she runs across the finish line, you remembered a doctors voice telling you she'd never live past a year old. "Why are you crying mom?" after her recent theater performance. Those tears of pride for my baby, for all the hard work she put in, this child who would likely never talk. "Why are you crying mom?" as she leaps fearlessly into the deep end of the pool and comes to the surface with a huge grin on her face. "Did you see me mom? Did you see?". Tears of thanks to God for allowing me to see this beautiful, wonderful child of mine.

A mother's tears. Joy, sorrow, fear, gratitude, love, happiness. All the things mothers cry about. I'm so thankful to Him for allowing to shed mother's tears.

Friday, April 18, 2008

Sweet Nothings In My Ear

Terri, over at Terri's Special Children Blog posted about an upcoming movie. Being an interpreter, this one is close to my heart, and a struggle I've seen played out in many families.

"Sweet Nothings In My Ear"
is the story of a couple facing a difficult decision. Suppose your child was deaf, but could have an operation (not without risk) that could make him hear again?

Dan Miller (Jeff Daniels) and his wife Laura (Marlee Matlin) only wants what's best for their happy and healthy 8 year old son Adam, who's been deaf since age 4. Laura opposes the surgery - a cochlear implant. Being deaf she doesn't consider it a disability, and believes an operation, regardless of outcome, would make Adam feel that something was wrong with him. However Dan, who can hear, misses talking and listening to his son. For him and operation is worth the risk, believing Adam's life would be easier and more complete if he could hear.

This is a devoted family facing a moment of truth. Together or apart, Laura and Dan must make a life altering decision on behalf of their son. You won't want to miss this powerful presentation from the Hallmark Hall of Fame on Sunday April 20th, 9/8c on CBS.

Sunday, March 23, 2008

Where I am has a name!

*please read my notes at the end of this article for an explanation.*

For some parents, the emotional strain is greater
February 20, 2008
Dr. Rachel Bryant

Mourning, that exquisite pain that comes with great loss, is typically described as having four stages. When a loved one dies, we can expect to experience shock, anger, depression and finally, acceptance.

Shock is usually experienced first, as our mind rushes to protect us from the onslaught of the pain that is coming. We might feel numb or as if we are on automatic pilot as we go through the motions of the day, barely feeling connected to the experience.

Anger and depression come next. They can be separate, intermingled, and moved about at very different paces and order as shock gives way to the full impact of the loss. Depression sets in when we come to the undeniable pain of the loss. It is the longest phase and encompasses the body of mourning as it means facing life without the person or experience that is gone to us.

Acceptance is the last and final stage although we don't necessarily reach this stage and stay there. We have good days and bad days, days where we think we are getting there and days with unexpected lingering tears, numbness and even anger. Ultimately, the goal is to get to the place of acceptance, and time is an ally in this goal.

Parents who have children with chronic conditions such as autism, central nervous system disorders or other developmental disorders that rob their children of "normal" childhood experiences have a unique and little talked about emotional challenge. For these parents, there is no finite moment as with a death, but rather many moments of loss at different stages of development where the loving parent sees the things their child will miss. Professionals who specialize in this area have coined the term "chronic sorrow." This does not mean that there is chronic depression about having a child with special needs. It does mean that there is a reality with which parents of special needs children have to contend. And as with mourning of any kind, it is distinctly personal, and one's own individual timing needs to be respected.

What makes this challenge different is that the mourning, or chronic sorrow, continues to emerge at various stages. There is no end point. All families have fantasies about the life of their family in general and the future of their children in particular. We hope our children will be smart, healthy, kind, and successful. We imagine their first days at school, their first play dates, their academic successes, participation in sports or the arts, always with the desire to watch their budding independence and increasing sense of competence. We also imagine other people seeing our children succeed, and our children basking in the reflection of smiles that come from close friends and admiring family members and teachers.

If a child has mild limitations, dreams may be altered to meet the specific needs of the child. But big dreams about their life and future are still attainable. This mourning can have direction and an end.

But what if those needs are profound? What if a child's needs require vigilance, therapists, special educators and doctors? What if a parent is exhausted daily from struggling to give of themselves to fill the gaps they feel in their child? And what if the gains in return are sometimes so small they are imperceptible? What then?

The intimate connection that a parent has with their child means that there is a daily awareness of their child's struggles. And when there is no road map, no sign post that says at year 5 you will be here, or at year 20 you will be there, how do you proceed? And when you're tired of hearing, "Just take it a day at a time," or have tried to explain to strangers why your child isn't behaving as expected, there can be a profound sorrow and isolation that makes you question your very worth.

My friend who has a child with autism, about whom I've written, tells me: "You know when it's hardest? When a friend comes over and their 4-year-old is doing simple things I don't know if my child ever will. That's when I have a bad day." Many strong marriages have ended because of this unique pain and the sometimes excruciating uncertainty of where this is all headed. Again, this does not mean that the parent does not experience the daily joys of their child whom they would not trade for the world, but rather that there is an underlying reality that requires attention as well.

If you are the parent of a special needs child who is struggling with fears, doubts, and sorrow, please understand that this is normal for the parent who simply loves their child. The chronic fatigue alone that often comes from parenting a high needs child can be debilitating. Realize that you are not alone. Consider seeking the support of a professional who works with special needs children or a support group. If your marriage is strained, talk with your spouse about getting some needed support. Acceptance here means understanding there is no endpoint, to the love or the struggles.

******When Angela was born, I didn't not mourn the loss of the typical baby I thought I was going to have. Being told Angela had Down Syndrome was actually more of an affirmation of the years leading up to her arrival. But the last year or so has been rough, to say the least. I think I'm just now getting to this stage....11 1/2 years down the road!!! Suddenly things are REALLY tough and I'm exhausted. Some of those "firsts" have never happened for Angela (like being invited to a sleep over, or the birthday party of a typical peer), and I'm just realizing it. I'm also able to kind of see where Angela is going to be as an adult, and it scares and saddens me at the same time.

"Chronic Sorrow" isn't something I've always felt, but it very accurately describes where I've been for the past 6 months or so. Strange that I'm just now at that point. It doesn't mean I don't love her. It doesn't mean I don't consider her a gift that we were given. It just means I'm missing some things, and it's hard some days to see that. But more than that, I think it helps others who haven't walked in my shoes, to understand what I cannot explain to them. Don't get me wrong. I don't see myself as being in a constant state of mourning, but I'm sure that I will probably pass in an out of this phase throughout my lifetime with Angela.

Monday, March 10, 2008

To worry or not to worry....

Tonight I came home to find a note on the door, from a mom of one of the other kids that went to Ca. with Tyler. She couldn't find my number but remembered where we live (we're kind of hard to find) wondering if I'd heard from the boys. Turns out one kids dad did buy them bus tickets, and about a week ago had them sent to a UPS office near where they were staying. The tickets were for a bus home at 4:30 this afternoon. To his knowledge the envelope was not picked up. We're waiting for him to confirm this.

Nobody has heard from ANY of the boys in 10 days, which kind of has everyone worried. I did look around in the county jail system there to see if any of them had been picked up, but they're not in custody.

Now what? Any suggestions? We can't list them as "missing" because they're adults (or at least the legal definition of one!) It's very strange that NONE of us has heard anything from them. One boy's mom said he was calling her every couple of days, then just stopped 10 days ago. Exactly the same as my contact with Tyler was going. They're resourceful enough to find a phone and contact one of us, but they're also kids and if they've managed to get into trouble will avoid us. I'm hoping that's all it is.

If anyone reads this who is in San Diego County, specifically Poway, drop me a note, will ya?

The Fledgling

The Fledgling (aka my son Tyler) is coming home. You may remember my post a couple weeks ago when he decided to up and move from Minnesota to California. No money to speak of, no job, just an adventure of sorts. You know...the kind that cause mothers to go gray.

He's been calling me every couple of days or so, just to check in and tell me of their latest escapade. By his 3rd day out there he was complaining about how hot it was. By the end of the first week none of them had found a job. ("Mom! All immigrants have the minimum wage jobs!"...something we warned him about being 20 or so miles from the border.)

About a week and a half ago he called me and sounded really down. "You were right mom. I should have listened to you. How come you're always right about stuff like this? Anyway, we're coming back we just have to get bus tickets. Only problem is we only have $70 left and it costs $175 for two of us. (they went with 3, turns out the 3rd kid is staying out there.) I offered to buy him bus tickets but no, he didn't want me to do that. I offered to wire him some money so they could EAT on the trip home but no, he didn't want me to do that either.

I haven't heard from him since. His phone is now disconnected, and I know he doesn't have any money left.

And so the mother worries.

Saturday, February 23, 2008

The Fledgling Called

Tonight Tyler called to give me an update on his new life in California (or "Cali" as he prefers to call it.) He's applied for jobs at a couple of places, including Taco Bell, where he was working here. Hey, it's a job!

The grandmother of one if his friends gave them some tents, so they're going to be striking camp...hopefully somewhere it's legal to do so!

He's having fun and enjoying the adventure, and I guess that's the most important part, right? I've said all kinds of prayers for him, and try to remember that God loves him even more than I do. I pray that he listens to that still, small voice and makes good decisions. That he stays out of harms way. That he's able to keep enough money in his pocket to eat, stay warm and dry, and to pay his cell phone bill so he can keep calling home!

Friday, February 22, 2008

Spreading His Wings

For about 3 or 4 weeks my 19 year old son Tyler has been talking about going to California. Well...not "going" really, more like "moving". Cuz, you know, he has a minimum wage paying job, the clothes on his back, and that's about it.

I thought it was all talk, except that while we were on the Make A Wish trip there were lots of phone conversations with his friends about buying bus tickets, who's paying for what, etc. I began to get a little worried, some of it for him, and some of it for Angela. She already has one brother who she sees only once every year or so, and she misses him terribly. She's very attached to all her brothers, and I worry how this will affect her that yet another one has moved away. But I digress.

Tyler and his friends really didn't have much of a plan aside from buying tickets. No jobs waiting for them when they get there, and no place to stay. You know, a well-thought out adventure that I had to sit back and watch unfold!

We arrived home on Sunday evening, and he left almost as soon as we got in the door to "get things done" before getting on a bus Monday night. Things like one of the boys didn't have an I.D., and driving around to say goodbye to everyone. And, since none of them have a car, they rented a U-haul to drive around in. know..they have all kinds of money to spare! LOL

Monday afternoon he came back, just for a few minutes, to say goodbye. He gave me a hug, and then hugged Angela. She asked him, "You're coming right back Ty? Tomorrow you come back?"

I answered, maybe incorrectly but I wanted her to understand, "No Angela. Tyler won't be back tomorrow. He's going to be gone for a long time, like Robbie."

She got big tears in her eyes and gave Tyler another hug, then watched at the kitchen window as he walked out the door. His friends were waiting in the cab of their rented truck, but when Tyler left he walked around the side of the garage, staying out of sight for several minutes. I know he went there to cry, that he realized just how big this really was, and that it wasn't just about him, it was about all of us.

The bus was supposed to arrive in the bus station around 9:30 pm that night, but he called me at 10:30 asking if I knew a way to check the bus schedule because it hadn't arrived yet. When the bus did finally show up there weren't enough seats on it (how does this happen when one buys a ticket? And, I didn't realize there were still that many people who traveled by bus.) After spending the night who knows where, they finally got a seat the following morning.

He called me several times throughout the ride, to tell me where they were and about the various people on the bus. They finally arrived in Poway, CA yesterday morning. A friend of a friend picked them up, and the first thing they did was visit a beach. (I think this is hilarious, considering while we were in Florida we couldn't get Tyler to go in the ocean past his know...there's sharks and stuff.) They climbed some big hill, and swam in someone's pool. Today they plan to look for jobs and a place to live, because between the three of them they have about $800 left, and that ought to get them an apartment on the beach, huh? Never mind food!

So why am I telling you about this? I'm writing to tell you about some of the requirements of motherhood that nobody told me about. Like the part about letting go. Letting them fall on their own butt, but being ready to help them back up if need be. The part about sitting back and watching them, knowing exactly the mistakes they're making but really not being unable to say anything about it. Don't think I didn't try talking him out of this big adventure. Don't think I didn't try to help him come up with some plan of action, like saving money first! I did all those things, but in the end it comes down to one young man wanting to strike out on his own (and get out of the sub-zero temperatures of Minnesota) and find his own way.

I'm still going to put some money aside for an airline ticket for him...just in case.

Saturday, February 09, 2008

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-

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

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