Great Parents, Lousy Lovers

I confess, sometimes when being a great parent, I become a lousy lover.

When Andy and I did our premarital counseling, we were advised to do marriage counseling or a marriage retreat once a year. Although we have not gotten to it every year, we have been able to do both options a couple of times. Marriage takes work, it takes time, and it takes making it a priority. I am passionate about marriage. It is not just that I love my husband, but I really do believe that the greatest blessing we can give our children is the blessing of our marriage. My parents are divorced, and although my mom is now married to a wonderful man, that blessing was not there when I was growing up (and my parents were great parents).

Our girls know that mommy and daddy love each other, and they go out on dates. They know the two of us need time alone, and they know that our family is not all about them. All of these have not come naturally, but we have learned these tools, especially through Counseling. It is easy to forget and let the kids take over. So we try hard to come back to what makes our marriage strong.

Andy and I recently found this book, "Great Parents, Lousy Lovers"  by Dr. Gary Smalley. I had to share the table of contents.

1. Generation Observation
you might be a great parent, lousy lover if you grew up in the '80s, rolled up your pants, puffed your bangs, drove a Camaro, or have more than 2 Bryan Adams songs memorized.

2. Princess and Queen
You might be a great parent, lousy lover if you feel like a cook, maid, or shuttle, and you run your home like a hotel.

3. Preparing for Change
You might be a great parent, lousy lover if you consider an appetizer the free applesauce that comes with the kid's meal.

4. The Kid-centered Home
You might be a great parent, lousy lover if one or more of your children sleep in your bed more than you do.

5. Choosing between Life & Wife
You might be a great parent, lousy lover if you have ever responded to a friend's engagement announcement by saying, "Are you sure you want to go through with this? Think it through long and hard."

6. How to Add More Time in Your Day
You might be a great parent, lousy lover if your idea of a date night is watching the kids play on the playground at Chick-fil-A.

7. Building Margin
You might be a great parent, lousy lover if you are consistently late to events and activities because you are coming from other kids events and activities.

8. Four Spiritual Journeys
You might be a great parent, lousy lover if you have adult children living at home and they refuse to give up their Star Wars bedsheets.

9. Your Spiritual Journey
You might be a great parent, lousy lover if your only alone time with God is to calm you down and to keep you from "going off" on someone small.

10. Your Spouse's Spiritual Journey
You might be a great parent, lousy lover if you think that you don't even need a spouse to have a great marriage.

11. Your Child's Spiritual Life
You might be a great parent, lousy lover if it is more important to you to have your child in the accelerated reading program or on the honor roll, rather than to create a home where mom and Dad thoroughly enjoy each other.

12. Your Marriage Journey
You might be a great parent, lousy lover if before you leave the house, you ask your husband, "Do you need to go potty before we leave?"

13. Dream Big
You might be a great parent, lousy lover if you have ever been tempted to look for greener grass on the other side. Keep in mind, where the grass is greener, there is a septic leak.

14. Play Hard
You might be a great parent, lousy lover if you have told your family that they are going on a family vacation and that you demanded that they have a good time.

15. Laugh More
You might be a great parent, lousy lover if the majority of laughter in your home comes from a pop star with a split personality or a sponge that lives under the sea.

16. Touch Often
You might be a great parent, lousy lover if you have ever had a kiss interrupted by  a kid screaming, "Mom, can you help me wipe?"

17. Great Lovers
You might be a great parent, lousy lover if you have sex less than 4 times a month and they area ll quickies.

18. Sex after Kids
You might be a great parent, lousy lover if your "Tonight's the night" is regularly met with "Let's shoot for tomorrow night."

19. Great Men, Great Women
You might be a great parent, lousy lover if you've ever wondered why your spouse wasn't just like you.

20. Great Churches, Great Marriages
You might be a great parent, lousy lover if you choose a church based only on its kickin' kids program.

'Would you like to have Down syndrome?'



















By Amy Julia Becker

Our daughter Penny (above left) was born with Down syndrome almost five years ago. After the initial shock of her diagnosis wore off, we began to feel grateful – privileged even – to have a child with an extra 21st chromosome. Penny introduced us to a world of special needs and special people. She opened our hearts to a wider understanding of what it means to be human and what it means to see every human being as a gift.

Penny has a little brother, William (above right), who is a typically-developing two-year old. She has another sibling on the way, due in January. When I was pregnant with William, I often received comments about how good it would be for Penny to have siblings. To have role models, so to speak. And I often responded, “Yes, and how good it will be for Penny’s siblings to have her.” As a role model, so to speak.

In our culture, having a family member with a disability is often viewed as a burden. When I wrote a piece for the Motherlode blog of the New York Times (Deciding Not to Screen for Down Syndrome) about my choice not to undergo prenatal screening during this pregnancy, many of the comments implied I was a negligent mother: negligent to the child in the womb, perhaps, but more so to William. William, it was assumed, would shoulder the ‘burden’ of caring for his sister, and he would also shoulder the ‘burden’ of caring for his younger sibling should I give birth to another child with special needs.

And yet when I look at Penny and William together, I don’t see one child who’s a burden and one child who’s bearing the brunt of having a sister with a disability. Rather, I see Penny and William in relationship. There are some difficulties—Penny grabs her brother’s toys sometimes and pesters him with her foot during meals and talks to him in a stern voice if he disobeys. William has temper-tantrums and says “no” just to bug her and grabs her toys in return. Together, they are learning how to share, how to communicate, and how their actions impact other people. Penny has a little brother who will help her when her fingers can’t manage a fine-motor task. William has the privilege of growing up with a big sister who has more empathy than almost anyone I’ve ever known. He sees her scamper to get a cane for her great-grandmother. He hears her ask to pray for the little boy in her class at school who can’t walk. Perhaps he notices the look of alarm on her face now that my pregnancy has progressed enough that I struggle to get up from playing with them on the floor. He sees the look of concern whenever he cries and she rushes to his side: “Do you need a hug, William?”

In other words, Penny is already a friend and an annoyance, a role model and a sparring partner. Some of that is because she has Down syndrome. Most of it is just because she’s his sister.

But life will be harder for Penny, I suspect, as she navigates the challenges of a society that has trouble accepting her and often mocks the characteristics associated with her condition.

Despite all the limitations that come with Down syndrome, I continue to believe that Penny’s life is a gift, and that she has a positive role to play in our family and in our community.

I was talking about these things with a friend the other day, and I said, “Other people see it as a negative that Penny is in our family, but I see it as just the opposite. I often wish that I had grown up with a sibling with Down syndrome. I think I would be a different person, a better person.”

My friend replied, “But have you ever wished that you personally had Down syndrome? If Down syndrome is a gift, then is it a gift you would want for yourself?”

And I said, “The thought has never crossed my mind.”

At first, I felt guilty. In this hypothetical universe, why wouldn’t I want that extra chromosome? Some of my answer stems from the reality that life with Down syndrome is, in many ways, harder than life without. But some of it is that I’m content with who I am, just as I am content with who our daughter is. I wouldn’t add a chromosome to my genetic makeup, but I also wouldn’t take it away from Penny’s.

What I would do, however, is offer every individual who doesn’t have Down syndrome the opportunity to know and love someone who does. People with Down syndrome are often talked about in polarizing terms. They are either a ‘burden’ or they are ‘angels.’ Neither is true. People with Down syndrome are people. Many of them face medical, social and emotional problems. Many of them also exhibit an extraordinary sense of compassion and care for others. Will Penny be a burden to her brother? I doubt it. I suspect that she will be a blessing to him, that she will add great joy to his life even as she needs his help in aspects of her own.

So I’m back to where I started: grateful that Penny and William have each other, grateful that this new baby will have these siblings, and grateful that I have the privilege of knowing and loving each one of my children.

Amy Julia Becker writes about theology, disability, family, and culture at Thin Places.

Giving Back


And this wasn't all the food! I saw alot of mothers who looked recently PP. I hope our smiles and congratulations helped ease the pain of a sick or premature infant.

And that day, I hugged my babies tight and gave thanks for all the advances in neo-natal technology. Because of that, I have my Georgie Pordgie Pudding Pie.

Well, dang, who is that hot chic?

Why, yes, this is me! Thank you, Shannon, for such a nice article!

I am so glad the interwebz can't see me now! I have not showered, brushed my teeth and my house is a mess because we are doing some MASSIVE cleaning before putting up holiday decor!

Detoxing the Baby

On Tuesday, Cole had a bad reaction to three vaccines. That night, he went to bed at his normal time, between 7 and 8.

At 9:30, he woke up crying and was very warm to the touch. His injection sites were swollen and hot to the touch, but not as bad as that morning. However, there had been no swelling or warmth since the inital problem... and his eyes were glassy. He wouldn't nurse and wouldn't play. I took his temp and it was 101.1 degrees under his arm. We think you are supposed to add one or two degrees for under arm temps; anyway, no matter how you dice it, he was running a fever.

Because of the swelling and fever, I called the on-call doctor and physically and mentally prepared to take him into the after-hours clinic or ER. Thankfully, the on-call dr called back quickly. It was the same man who caught him (you know, the one who I said, "I don't care WHO you are!" to) but I don't think he remembered us. Heh. Good.

Dr. R told us to do bendryl and OTC pain meds and monitor him at home. If he didn't improve, we were to take him to the ER. We dosed him and then I stripped off my shirt and his sleeper to cuddle on the couch to do some skin-to- skin. As we were cuddling, his breathing became fairly rapid. I prayed and prayed to not panic... and also slowed my breathing to deep, rhythemic breaths, slow and deliberate. I closed my eyes, placed my hands on his head and bottom and pictured the toxins leaving his body.

(I also prayed that his godfather wasn't on duty that night. His godfather is an 911 dispatcher and I didn't want him to have to take the call that something was bad with Cole!)

I was thisclose to calling 911 when his breathing improved. 20 minutes later, I took his temp and it was 98.9 under his arm. He slept with me that night and slept in to 8:30 the next morning! Now, I don't know if he "slept in" from the medicine or because he wasn't feeling well... or if he normally would sleep in if it weren't for his siblings waking him at 6:30 am!

He was fussy again that morning, so he had another dose of pain meds.

That night, I took him into the chiro, so she could adjust him (which always feels good!) and to see if she had any advice about ridding the toxins from his body. She and another chiro did an adjustment on him when he was laying on my belly. He wasn't happy about strangers messing with him so close to bed time but he must have felt better shortly after because he nursed WELL for the first time in 36 hours. Really, really well.

Her advice was to take Blessed Milk Thistle myself, so he would get the dose through my milk. She also recommened a high anti-oxident diet (like onions, garlic and so on). She suggested putting a raw potato on his skin to draw out the toxins and showed me a gentle way to rub his legs to help his lymph system get rid of whatever caused his reaction. I can also use garlic oil on him and a few friend suggested making smoothies of anti-oxident rich berries. Cal/mag are supposed to help too; I already take those.

I know it sounds hippy-dippy and extreme but I want whatever caused my baby so much pain OUT of his body. And, frankly, rubbing his legs and feeding him garlic won't hurt him and could possibly help. Worse case senerio? Vampires stay away! ;)

For the past two mornings, I have put a potato on his injection sites. Think about how a potato reacts in a soup.. same concept.
:


For the record, his wounds:

Right leg, HiB shot


Left leg. Flu (top, black mark) and Prevnar.  This leg had the worst reaction, since he had two shots.

He's enjoying having his legs rubbed! He likes to flip around when I change his diaper so he never stays still for a proper picture!

Since he is little and breastmilk is still the major source of his food, I have made sure that everything he eats is pretty good for him. After Googling and some reading, there's not much I am going to add to his diet except kale, berries and beans. Adam makes a lovely rice with cilantro. For Thanksgiving, our friend brought a fruit salad and he loved the blueberries and blackberries from it!

Thankfully, both he and his clothes wash!

I'll write more later about what he is eating... hopefully, I can help him feel better.

Georgie Pordgie PuddinPie turns TWO!

Then and Now. Top, L to R: Georgie at his first Christmeas wearing a shirt that says, "All Mommy Want for Christmas is a Silent Night." My good friend and I went shopping two days before he was born. She passed on some "gut covering" shirts to me and I got that little onesie. After he was born, I nearly returned it in a fit of, "BUT I WANT MY BABY HOME AND CRYING!"
Georgie's NICU baptism.
Holding him.
A close up of him.

Now. And, yes, Joseph wore that shirt at 3.



Train decor.


Adam and Georgie building a dog at Build A Bear. Georgie has very few stuffed lovies so we thought he would like a dog. It was TRAMATIC stuffing the dog! He wanted it unstuffed! Then he wanted another Zhu-Zhu pet! Sorry kid.



Train blanket from Auna.



A Thomas Cake made by Adam. Georgie thought it was cool... until the next day, when Adam cut off Thomas' face and offered it to G. G looked horrified and refused to eat it.


Cole enjoyed the cake. Cole REALLY enjoyed the cake.

Who done it?

He did it!
No, he did it!
No, JOE DID IT!

Thanks for the cute sweatshirts!

Forever 14


















I was facilitating a workshop for the Ontario Association of Children's Rehabilitation Services a few weeks ago and I met a warm, wise woman named Mary Herlick. Mary shared with the group that she had lost her son Eddie (above) last year. Mary is still involved in trying to improve life for other families of children with disabilities. I asked her to share with us coping strategies for parents who have lost a child. I'm very grateful for the beautiful piece she's written below. Louise

By Mary Herlick

My son Eddie (above) had dark hair, long curled eyelashes, and brown eyes. He also lived with cerebral palsy, communicated with facial expressions, had a G-tube, and used a wheelchair. Eddie had frequent admissions to hospital for continuous dystonic muscle spasms. He fought so hard, but with no treatment options left, Eddie died on October 13, 2009. Eddie died quietly, in hospital, surrounded by his family. He was 14 years old – now forever 14. My husband, Eddie’s twin sister and I miss him terribly.

The emotions a mother has when her child dies are enormous: overwhelming sadness, shock, numbness, anger, unfairness. Each parent’s journey with grief is individual. No two parents have the same feelings or reactions. I will share with you my journey of how I’m learning to move from days filled with my son’s presence to days filled with his memory.

As the early days passed, the enormity of my loss became real. I remember waking up days after the funeral, feeling fully rested, and thinking: ‘How am I going to live without Eddie?’ I thought back to when Eddie was three months old and diagnosed with cerebral palsy. I remembered the shock and sadness I felt then, the weeks of crying to mourn the loss of the child who was not going to have a typical life, the changed plans, and the adjustments. Knowing that I had experienced deep pain once – and that life with Eddie had been rewarding and filled with joy – I knew I could learn to accept this change in plans once again.

I have found it very important to really listen to my feelings. I try to stay in the present moment. I do what I feel like doing. I don’t worry about what others think I should be doing or not doing at any given moment. In the early months after my son died, I told my closest friends I needed to be with them. They made that happen. I have wonderful friends who listened, cried, hugged and reached out to me. When I feel down, I let them know and they lend an ear, an immediate email, or a card comes my way. My extended family has supported me: they call and ask how I’m doing and they mention Eddie’s name. How important it is to me that they mention Eddie or write his name in a card!

There is so much time in a day and a night to fill. Many nights I have trouble sleeping. What helps me? Some nights a warm cup of milk, going downstairs to sit quietly, or melatonin (a natural supplement) just before sleep. And some nights nothing helps and I stay awake all night. That’s okay because I know that I am doing the best I can.

As the days turn into months, I feel stronger and I feel hopeful. I have more good days than not. On my good days when I have lots of energy I do the usual household tasks. I cook big batches of favourite recipes and freeze the extras. I take long walks, enjoying the fresh air, taking in the beauty of nature, and listening to the sounds around me. I am able to set my own hours so I work longer hours on these days. I think about all that my son endured, how he persevered through it all, and how I am thankful to God that he no longer has to suffer. I also gently sort through my son’s belongings, a very hard but meaningful task for me, feeling each item, and carefully deciding to what organization or to whom I want to donate it.

How do I manage on the down days? I do just what I have to do to survive. I work but only as much as I need to, I breathe (long, deep breaths), I cry, I light a candle, I pray, I sit outside, I call a friend, I listen to music, I remember.

If you are reading this and you, too, are bereaved, here are a few tips I have learned from others:

• be kind to yourself and honour your feelings (I believe this is the most important).

• take care of yourself – eat nutritious food, drink lots of water, get rest, exercise.

• crying is good for those who can cry. Not crying is normal and okay too.

• it is a myth that time heals. The truth is that acknowledging your feelings and working through your grief allows healing.

• prepare ahead of time what you might do on your child’s anniversary or during the holidays (I learned the hard way that not having a plan resulted in a very anguished day).

• anticipate what you will say when asked the question, “How many children do you have?” I have said different things in different situations: “I have one living child” and “I have one child and my other child died” are examples. My favourite is: “I am the mother of two children, a daughter who is 15 and a son who lived to be 14.”

• when introducing yourself to others, place your hand over your heart, take a deep breath and tell those gathered the name of your child who died.

• keep a notebook handy to write down strategies that help you, which you can pull out when you are having a hard day.

For those of you who are newly bereaved, slowly you will find your way too on this new journey. When you are ready, I highly recommend contacting Bereaved Families of Ontario. I have found the resource library, the newsletters, and the presentations at my local chapter meetings of particular benefit to me. Since the worst has already happened – my child has died – I have confidence in myself to keep trying to heal. I wish you the courage to do the same.

Cherished Moments...




Today I was sitting quietly in another room
in our home when I heard laughter and the
everyday goings on of playfulness taking
place between my husband and our child in our
child's room.

But then my attention was completely captured when
I heard the voice of my husband saying to his child...


"I have this little boy...he's so sweet
I think he's made out of candy."


and Matthew giggles filled the room and my heart
danced with pure, sweet joy.

I am forever blessed and touched to have heard that
and I am so thankful for my loving husband and our
"sweet as candy" child, Matthew.

Oh and the keys?

When we got to the doctor's office, Georgie emptied my diaper bag looking for woo-woo's. No keys.

When we got into the exam room, I took out the wet bag, wipes and two diapers.

KEYS!

Thank you, God, for keeping my life interesting... and messing with me. You're just havin' fun, aren't You?

The Public Health Nurse's Daughter Stops Vaccinating

I got home today at 11:45, after being gone since 8:30 am. As I tossed my keys on the island, I looked at Adam and said, "Finding those has been the only good thing that has happened today."

***
Yesterday, I went to MOPS as per normal. Adam is home all this week and wanted some alone time to do manly things, like... I dunno. Play with power tools? Anyway, I promised that I would take Joseph to school, then take the other three to MOPS, Cami to preschool and then come home. I did as planned.

When I got to MOPS, I opened Georgie's side, got Camille out, used the power key fob to open Cole's door, put him in the ergo and, I definatly remember, threw the keys in the diaper bag. I got Georgie out, locked the car, and went inside.

After MOPS, I took the kids to the car and... no keys.

No problem, I thought. I probably left them in the baby nursery by mistake. I dragged the kids back inside and... no keys.

I ask the remaining MOPS members if they had seen a set of keys. No keys. I ask at the front desk. No keys. I leave the kids with a member of the staff and go outside to look in the car. I know if they fell out of the bag and in the car, I would be able to see them. No keys. I empty the diaper bag for the second time- I literally take EVERYTHING out- no keys.

At this point, I call it lost and call my friend to come get me. Why not call Adam? Because he had gone swimming and was unreachable!

My friend comes to get me and takes me home. Fourty five minutes later, Adam comes home. He takes Camille to preschool and goes to get another set of keys, plus picks up the van. We look in the diaper bag. No keys. We figure they must have fallen out of my diaper bag and been put in another mother's bag.

***
Today Georgie and Cole had WCC. I empty the diaper bag to refill and make sure I have snacks and diapers. No keys. I figure St. Anthony has his work cut out for him.

I take the babies to their appointment. When H looked in Georgie's ear, Georgie screamed like we were sticking him with red-hot needles and I had to put all my body weight on him to hold him down. Okay, not ALL but I did have to pin him!

(He's 31 pounds and bigger than Camille at 4 years old!)

Cole checked out super-bear-awesome. He's 16 pounds, 8 ounces? Anyway, sixtenn pounds.

When it came time for the vaccines, we went over my wishes. Most people know:

a) I don't care what the hell you shoot or don't shoot your kid up with;
b) Adam and I agree that as long as we have a little one in the house, we will do the flu shot. Until 2 years ago, I got the flu shot, as did the kids. Then Georgie was born and I gave him a massive guilt trip about how I always get the flu shot and DEAL WITH CRYING CHILDEN as they get the flu shot and he NEVER EVER gets it, and we HAVE A PREEMIE ... so he got it that year! HA!;
c) we are more concerned with the "sheer dumb luck" illnesses that you can't help but get, like whooping cough, not the ones that you have to have sex or change bodily fluids to get;
d) we have moral objections to fetal cells lines.

So, I declined two for Georgie (will revisit at school age) and agreed to the flu shot, Prevnar and HiB for Cole. He was supposed to get another but my dr said, "Well, I think four pokes is a bit much for today. Why don't we do the other when he comes in for his second flu shot in a month?" I thought that was really nice!

When the nurse came in, I had her do Cole first since Georgie was still crying from the torture of his physical exam. She gave him his shots and then said, "The flu shot has H1N1 in it so the area might get a little red." I expressed surprise at the H1N1 part (and, honestly I was a little annoyed that they told me this AFTER his shot!) and we chatted about the flu this year. Since Cole was dealing with the trauma of his shots by nursing and Georgie was dealing with the trauma of the physical exam by Being Two, she got another nurse to help with Georgie's shots.

When Georgie was done, she handed him to me, and looked down at Cole's bare leg. At the same moment, we both realized it was a BRIGHT, ANGRY, SCREAMING red. She said, "Is that from where you were holding him?" I said, "No, I don' think so," and moved him to look at his other thigh. It was also a bright, screaming red. We touched them and they were warm to the touch and the red area was getting bigger as we watched. She left to get the dr.

The dr came right in and ordered benadryl and told the nurse to keep us in the office for another half hour. He made a comment about splitting up the combined vaccines in the future and I thought, "Buddy, sure, IF I ever let anyone near my kid with a needle full of deadend diseases EVER AGAIN!"

(My other thought? "Don't have a panic attack. Don't demand a transport to the hospital. You trust Dr. You trust the dr. Cole is fine. Cole is fine. Cole is fine... DON'T CRY!" Damn PTSD.)

Another nurse came back in the room and helped us move to another area so they could use the exam room. Although Cole was happy as a clam, I kept checking his chest and back for marks. I noticed a small hive beginning on his mouth so we hurried the benadryl. I got the privledge of waiting another 20 minutes to monitor his reaction while Georgie kept up the Being Two Toddler Meltdown which was going on 60 minutes.

At their peak, 90 per cent of Cole's thighs were raised, read and swollen. He had the flu shot and Prevnar in his left and the HiB in his right. He reacted on BOTH sides, although it was slightly worse on the left.

I spoke to both the nurse and dr about the reaction. We all agree it is not a reaction to the rubbing alcohol or latex in the band-aides, as he has had both before. During Georgie's exam, I asked about giving vaccines to children who have had reactions to eggs. As recently as last week, Georgie ate eggs for dinner and had a bleeding diaper rash that day. He broke out in hives at 7 months when he ate egg white. Joseph got a rash aorund the mouth when he had eggs or egg white when he was less than a year old. Because they did not have an epi-pen worthy reaction, he felt fine going ahead with the vaccines.

Before we left, I made sure Cole was okay to be rear facing in the car, without an adult sitting with him. And yes, I made sure he was breathing when we were at stop lights.

***
I feel horrible. He had formula as an infant because I didn't pump enough milk, it was easier to use when out and about and those few bottles at the beginning (when he would cry and cry but not nurse and we didn't know about the tounge tie) kept us from severe dehydration a nd a hospital stay.Did the formula cause a "leaky gut"? Did it make him more prone to allergic reactions? I know all the pros and cons of vaccinating? Did we make all the wrong choices?

I have some more research to do about stopping vaccines in the middle of a seris. I doubt I will take him to get the flu shot, round two. I never liked the idea of combo vaccines but never had a reason to insist on single doses. Now, if we cont vaxing, you bet your butt I will be!

My chiropracter is well verse in vaccinating and side effects but is on maternity leave because she had her sweet baby girl yesterday! However, the OTHER chiropracter, who was also at Cole's birth, is very skilled and knowledgeable. Oh, yes, I called her so we can see about "detoxing" him and getting whatever does not agree with him out of his sytem.

***
Joseph had an eye appointment today so I picked him up from school early. Remember my conversation with the school nurse? I saw her again and we chatted and I told her about Cole's reaction. She made a comment about doing the vaccines half-doses at a time. Um, no. Nononono. And if she thinks I was a nut job THEN wait five years until Cole enters school!

Dark clouds clearing

I wrote a while ago about my concerns about Ben's school placement. Thursday was our teacher/parent meeting and I left in tears understanding that Ben's program was 100 per cent life skills. In the morning Ben has gym and art, and in the afternoon he has 'math' -- which is working on a box that might contain flashlights to be put together, or beads to be sequenced on a string in a certain way -- and then social skills, which is a cooking class where they make things like bologna sandwiches. I was told the math boxes were to teach skills that might be needed in a day program where adults do 'piecemeal' work. I was also told that Ben has many defiant "behaviours" at school when he simply doesn't want to do what is asked of him.

I couldn't track exactly how we had arrived at this point. Three years ago he was at a school for the deaf in a mixed-grade class with other students who didn't have the complexity of his special needs (in other words, they were typical kids who were hard-of-hearing or deaf). The day was spent doing academics modified to his level. When it was time for Ben to move to a high school, we were given two options: a self-contained class for students with developmental disabilities in a windowless basement of a high school that was accessed through the janitor's workshop (I kid you not!), or the current school Ben is in, which was described as a school for students with mild intellectual disability.

Even though it was mentioned at the orientation, it didn't sink in that in choosing this second school Ben would not get a high-school diploma. I felt we were against a rock and a hard place: this school or the windowless basement.

Ben is able to read -- probably at a Grade 2 or 3 level -- but there is no literacy program in his current schedule. He is able to hear with hearing aids and needs phonics to improve his reading skills -- but the other kids in the class don't hear so they don't do phonics.

I met with the vice-principal and teacher today because I don't think the program is best meeting his needs. There are two distinct issues. The first, which has nothing to do with the school but with our education ministry, is that the standardized literacy and math tests in high school preclude most (many?) students with intellectual disabilities here from getting a high school diploma. I'm all for standards, but I'm also for adapting the curriculum so that every student can be successful, regardless of disability. To me, this is a rights issue. And the second is that Ben's current curriculum doesn't promote and develop his academic skills.

When I met with the school today, I was shown a graph that showed that the students in Ben's class are in the first percentile for cognitive function. I was also reminded that in a psychological assessment a couple of years ago, Ben tested in the first percentile. I shared my concerns with how this assessment was done (it lasted about 15 minutes, whereas we've had other assessments that were done over a number of days and yielded different results) and no one who knew Ben was present during the testing (important when your child uses modified signs that may not be self-evident to a person who knows ASL).

I was told that students at this level are not able to meet the requirements of the high school degree. While I thought my son was entering a school for students with mild intellectual disability, I learned that the composition of the school has changed greatly in the last two years, and that his class is actually a developmental disability class for students who are deaf or hard of hearing and have other special needs.

Apparently "DD" students don't ever receive high school diplomas.

And it's rare for students with "MID" to get high school diplomas.

There's something about the pigeon-holing of students into these categories that I find very disturbing.

I need to do more digging to understand how it is that students with developmental disabilities never get high school diplomas -- as I can think of some instances where my understanding was that they did, with a modified program.

And I need to make sure that Ben is in a program where he is improving academically -- at whatever level -- because in my mind that's why he's in school. I don't mind a small focus on life-skills, but in my opinion the scale is out of wack.

The school staff were very open to my concerns and we will have a larger meeting to look at what is best for Ben as well as consider more psychological testing.

In the meantime, I'd love to hear about school programs for students with intellectual disability in your jurisdiction. Do any of these jurisdictions grant high school diplomas? I posted an article many months ago about how there was variation between states in the U.S. on this issue. How is it equitable that a student with intellectual disability in one state can earn a high school diploma, but not in another?

Ellie's Journal, a Homeschool Craft

Ellie and I try to be creative as we do our homeschooling adventure. It seems like there is a lot of Language Arts and Math, and crafts sometimes take the backseat (although she would gladly just do art).

Yesterday we went to a store with the intention to do some "paint your own pottery." Ellie was really excited about the idea, but as soon as we got there she decided she did not like any of the choices available to her. So I asked if there were any other crafts we could do, and it turns out that there are quite a few options available, which means we have found a fun place to go at least once a month.

Ellie loves notebooks and journals. so she was really excited at the prospect of making her own journal. She got to choose the paper, ribbon, and stickers. I would say she did a pretty good job!

Then and Now

Georgie, a few days old, under the bili lights. My mother made him the bear blankie. It's his, in his box of things I can never give away.

 One of the first times I held him. I held him at birth and managed to convince a nurse to let me hold him while he still had his umbilical lines in. This day, they had them taken out in the morning and he had to rest before I could hold him again. I went up to the NICU promptly at 7, which the night sift came on, took of my shirt for skin to skin and held him while he "nuzzle nursed." It was quite upsetting (he wanted to nurse but couldn't figure it out!) so he got his binkie to calm down. And yes, I still have the binkie too!



All dressed abd ready to eat with the feeding tube!



Car seat test right before coming home.



And now, my big two year old, train obessed boy! He's grown so much and is now a big brother. Happy birthday dude!

The more things change, the more they stay the same

Two years ago, Nov 19th 2008 began much the same way as Nov 19, 2010.

I had a four and a half year old and a two and half year old. We spent the morning chilling, watching Playhouse Disney, before a quick lunch and taking Joseph to preschool. Camille fell asleep on the way home and I carried her up the stairs with difficultly, as there was an intense, searing pain in my pelvis. I put her on the couch and went downstairs to read "Edward's Story" on-line and sit on my birthing ball. I noticed some contractions through the pelvic pain but thought nothing of them, as I had had lots of BH and contractions during the pregnancy.

When Joseph came home, I called Adam in tears begging him to come home early and help with the kids. He did so and, shortly after they left to run an errand, my waters broke at 35 weeks.

***
Today we got off to a rough start as we took Joseph to school. I still have a four and a half year old in afternoon preschool but it is Camille, not Joseph. I have a two year old, but he is closer to two than two and a half. We are chilling out watchingn the HUB and playing with Little People. My house is a mess and I am unmotivated to clean it. (But, you know, that's a constant state!) We will have a simple lunch before taking Camille to preschool. Hopefully, Georgie will fall asleep on the way home and take a much needed nap.

Today, there's no pelvic pain and I am 35 weeks pregnant. I know his birthday is coming and I know the outcome of his prematurity. I know the pain and suffering that goes with having a child in the NICU but I know the joy and friends you make.

I think we've all come a long way since 5 pm on Nov. 19th, 2008.  And, yes, I wish he had been born healthy. I wish he had been born at term. But I love who he is and how his mere exsistence has made us grow. He's the third child I prayed for, the one I asked God for, the baby I wanted to name after Adam's grandfather. He is perfect, he is wonderful and he is just who this family needs.

Happy birthday my sweet Georgie Pordgie Puddin' Pie. We love you.

Technology: Hype or hope?

















I listened to a fascinating parent panel hosted at the Bloorview Research Symposium Tuesday. It was called Assistive Technology at the Dawn of the 21st Century: Juxtaposition of Hype, Reality and Hope. It was noted that 25,000 children in Ontario lack technology that would allow them to communicate or access a computer.

Holland Bloorview biomedical engineer Tom Chau (above left) moderated a discussion between four parents whose children have tried various communication technologies. The session was facilitated by students and staff in Tom’s Prism Lab. A focus of Tom’s lab is called ‘body talk’ research. This involves developing systems to detect physiologic signals – changes in brain waves, breathing patterns or heart rate – and translate them into electronic communication for kids who are non-verbal and immobile.

I wanted to share some of the parent comments with you.

What do you think about the hype around technology?

Karen Castelane: When I think about hype I think of the positives. It grabs the attention of the general public, stops them in their tracks and makes them take note. It motivates scientists to work in this field, and donors to donate, and gives hope to parents and therapists. It shows that this population has value and endorses the notion that communication is a right for all. When I think of negatives, hype can backfire when we don’t have quick results and the technology doesn’t live up to expectations.

Donna Cappelli: When my son Julian was younger people would say: “Isn’t there all this great technology? In five years you’ll hook up something to his brain and he can do anything.” But part of me has to accept how Julian is. If things don’t happen quickly, Julian gets frustrated. As parents, we have to take pause. I used to want to jump on everything but now I want to assess it.

How realistic is media coverage about assistive technology?

Donna Cappelli: I think media coverage is important. Everything comes down to money. Some of these technologies are being marketed for gaming because gaming makes money. If the media can show that the technology can be used in these other ways, it’s good.

Christopher Hopper: It’s helping you (scientists) stay motivated and engaged and pushing each other, whether it’s coverage in the popular press or scientific journals…Early on I thought maybe this technology will solve my son’s problems. Over time I learned that maybe there isn’t anything to solve. There aren’t any silver bullets out there, no magic wands. But there are different things that we can bring to bear. Through a tablet computer with a communication software, our son has gone from a rudimentary ability to communicate in sign to saying “I want juice or water” to…surfing on his iPad on YouTube.

Karen Castelane: My son Max is a normal boy trapped within a body. There is no existing technology to facilitate his communication. He can’t reliably and consistently get his body to move to hit a switch. He has basic yes and no responses. He can’t make his thoughts and needs and wants known. People who work with him need to have absolute patience. I think a learned helplessness sets in because we have to interpret for him. When we heard there was technology here that didn’t rely on physical movement…that hope bulb went off and we were totally committed. But four to five years in, we aren’t any further ahead than when we started. It’s frustrating. Our expectations are diminishing that Max will have access in his lifetime.

Donna Cappelli: Julian is able to communicate verbally, but his teachers and others who don’t know him can’t understand him. We had high expectations for technology but one of the difficulties we’ve had is to find something consistent for Julian. And on the other hand, when we do find something, Julian may reject it even though it’s appropriate. For example, he has single-switch access through a throat sensor that allows him to turn the pages of an online book. But the books from the library that he wants to read aren’t available online. So he has the access but nothing to use it with. So everything else has to catch up with this technology.

What are your dreams for your child?

Marcy White: To find out what Jacob’s dreams are. He’s trying to tell us something. If I had to choose one thing – he doesn’t walk and can’t hold his head up and is tube-fed. But if had to choose one thing, I’d say it would be to be able to communicate. We recently began using an iPod and I’m able to see in a very short period of time very appropriate use by him. I want to find a way to open him up because I know he has a lot to say.

Christopher Hopper: My dream is that he will grow up to be happy and fulfilled. Through assistive technology, Ben’s life has changed from black to white. I have the same dream for all children who are locked in a box. Being able to express choice, preference, love – it’s universal and it is a right.

Photo by William Suarez

The Day We Met Her

A year ago today, we got to meet Nina for the first time.

Nina's tired orphanage house greeted us with it's salmon colored walls and tall wooden door. As we walked through inside, we were immediately escorted to right into the doctor's office. Andy and I sat on the newspaper print couch, listening to our translator, worker and doctors speak to each other in Russian. A few minutes later a spunky little girl with Down syndrome walked into the room, ready to own the world and visit her daddy. A worker walked inside the room holding a little girl awkwardly on her hip, grabbed the little girl with Down syndrome and took her to the room across the hall where her daddy was waiting for her. The worker came back and was speaking to the doctor, laughing. I could tell she was saying that the little girl had been confused and in her excitement had gotten away and ran into the wrong room. Then I noticed the little girl the woman was carrying. She was scared, she was shy, she was holding on tight to the worker. Her head was misshapen, and her haircut was bad. Her eyes looked so lost. Then I felt the "thump" of realization. That little girl was Nina. That was the little girl we had been dreaming of.

Our first meeting with her was a lot to process. Although I did blog about it back then, we were still processing our doubts, concerns, and feelings. The little girl we met that day seemed to have many significant challenges.

So here it is, that small clip of the first day we met Nina.

A year, a year has gone by since that day in the stale doctor's room at the orphanage. Nina has changed, she is not the same little girl. The last 2 days we have tried to get a video of her, and right now she has decided she does not like her videos taken, so this is the best we could do.

In this video you can see she is doing pretty well with her pretzel legs (when she is not wearing her braces) and she knew we were taking the video because it has been a year since we met her. She is so aware of that! She even brings up the orphanage and I admit, I did not know how to respond to her question!
And this was tonight, when the other 2 sisters were watching a video. Except Nichole joined us after a while and was about to steal the camera.

Whack Magnet

We have a Target near us- not a SuperTarget but a nice, clean one that is normally pretty quiet. I went there the other day to get out of the hosue and look for holiday jammies for the kids. I just had Camille, Georgie and Cole with me, as Joseph and Adam were out bowling. The kids were fine- Cami was dancing around and Cole was fussing, so I was holding him on hip, pushing the cart with the other hand.

While I was pricing some jammies, I heard a voice say, "Wow, you don't need another one, do you?" and turned to see a woman, about my mother's age, with a slight sneer on her face. Tired of all the negative comments about my family size, I said smartly, "Actually, I have another one at home." Her eyes got wide and she said, "Older or younger?"

I really wanted to say, "younger and I'm pregnant wtih octuplets," but I just said, "I have an older son." Thankfully, Camille started chattering with her about our dog, so I was spared from the... I dunno. Shock? Horror of four children?

***
Today I went to the mall to do some holiday shopping. As we were in the bookstore's elevator heading down to purchase our books, a woman (again, about my mother's age), looked at the three kids and said, "You have stairsteps, don't you?" I made a non-commital noise and she asked their ages. I told her and added that I have a six and a half year old also. Her mouth dropped open and said, "What do you do in your spare time?"

"Apparently, make babies!"

What.The.heck? You want a list of my hobbies?!

The SixGifts of Prematurity

It's a long, hard ride filled with ups and down... but there are gifts to having a preemie. Yes, joy can and does come out of sorrow and suffering.

1. The gift of FEAR- It's terrifiying walking into an ICU, even moreso when it is your tiny, tiny child hooked up to all the tubes and monitors. Fear can keep us from bonding to our babies... but it is fear that brings us back to the hospital, day after day, to fight for and with our child. Because if we don't, who will?
And there is redemption in fear, in suffering.

2. The gift of WONDER- How can something so perfectly formed still have such an immature system? And how can someone with such an immature system survive all the medical interventions that would have grown men flat on their back, begging for mercy? And how can you love someone you just met, who shouldn't even be here for weeks or months?

3. The gift of AWE- I remember standing before Georgie, in awe of this tiny baby who was so determined to be here, be strong, and live.

4. The gift of LOVE- Your love just grows with every baby and it's amazing how much you can love someone so tiny and fraile yet so so strong.

5. The gift of FRIENDS- Real friends will bring you meals, pray with you, pray for you, cry with you and tell you your baby is the prettiest baby ever, even if they really think he looks like a hairy monkey. They bring you pumping supplies, call you long distance and ask, "How are you? And don't tell me FINE unless you really are FINE." And the NICU parent friends you make will be with you for the ride, and after, understanding what you mean when you talk about preemie issues, the NICU and everything in between.

6. The gift of HUMILITY- You thought you knew what to expect. You thought you knew how to parent. You do- but a preemie kid is a whole nuther ball o'wax. You realize you don't know much at all and need the guidence of others- and that's good.

A Year Ago Today

A year ago today, in the crisp and cold morning hours, my mom dropped Andy and I off at the Minneapolis International Airport. As we said goodbye, the emotional reality of the process wrapped itself around us and hugged us tight along with my mother.

We were leaving our two little girls behind. Andy for 3 weeks, and possibly up to 7 weeks for myself. We had worked so hard getting all the documents ready, we felt exhausted from that race. Four weeks before, we had sat in our living room wondering where the remaining $13,000 to cover our adoption would come from. But God sent the money, and we were about to fly across the ocean to rescue an orphan little girl.

The day before, as some dear friends had come to help us pack and pray for us, we had felt an overwhelming sense of being covered in prayer and showered in love. Walking through the airport, God's peace continued to move us.

A year ago, we did not know that the emotional roller coaster of adoption had just begun. We did not know that being in-country would be one of the most testing and trying times of our lives. That we would cry more and wrestle with feelings of abandonment.

A year ago, we did not know that God's grace, mercy, and compassion would visit us in such intimate ways.

I look back, it is all so real, almost tangible. It happened, we traveled, we were on our way to Ukraine. A year ago today.

Wanted: an integrated gym

This post has nothing to do with kayaking, but with the expression on Ben’s face (right).

This is how Ben looks every time I pick him up after his weekly physiotherapy session at Holland Bloorview. He’s ecstatic and chipper and obviously coming off of a workout “high.” He doesn’t get a lot of exercise during the week, but this hour of walking on the treadmill, climbing stairs and tossing a ball in the gym leaves him in a sweat.

I can only imagine that he would benefit from more of it.

It made me think it would be a great business opportunity for someone to start a gym for kids with and without disabilities. It would need to have a physiotherapist and perhaps other professionals who could oversee the activities for kids with disabilities. We would be one of the first to sign up!

It reminded me of a conversation I had with Amy Baskin, author of More than a Mom last week. I interviewed Amy about children with significant developmental disabilities who age out of high school at age 21, but have few opportunities for meaningful activities during the day, leaving their parents to scramble to create a good life for them.

“Why doesn’t some entrepreneur say: ‘There are all these adults looking for something funky to do’ and come up with something creative, like a cooking club?" Amy said. "There’s a whole group of people not being served and often money isn’t the issue. It’s that there’s nothing to purchase.”

I’d love to hear of innovative businesses you know that have sprouted up to target the needs of kids or adults with disabilities.

What Time Is It?


The answer to this question has a story.

My child, Matthew, has complete Agenesis of the
Corpus Callosum. He is 17 years old but he
functions on the level of a young child.

Teaching different animals and their sounds is
fun for all kids.

Quick example: I will say:

"Matthew, what is this?"

*shows him a Pig*



He will use sign language and sign "pig".

Then I will say:

"What does a pig say?"

When you ask a child what sound does a pig make, they
can typically tell you "oink oink." But Matthew cannot
SAY it so we worked instead

(for a lonnnnnnnnnng time)

helping Matthew learn how to make the SOUND a pig
makes....*snorrrrt*

It was very difficult for him to learn.

After a VERY long time Matthew learned how to make ONE
"snort".

It was a BIG event the first time that I heard him make
the sound. But the only time he could snort was laying
down on his back. If he would sit up, no more snort to
be heard.

After A LOT more practice and a long time, he mastered the
skill of making one single snort sound while sitting up!
It was a celebration!! Mama & Matthew piggy snorts filled
the room, accompanied with laughter.

There's no other way to say this except to just say it.
Matthew's Mama *points to self* is a goof. Matthew and I
are both silly and we laugh a lot.

I often make little piggy snort sounds for Matthew and
give piggy snort kisses. He can make one piggy snort back.
I wanted to help him learn to make several snorts in
a row so that became our mission and we worked on it.

The first time he decided to practice "snort, snort, snort"
all in a row was this summer right out in public while we were
outside walking on the sidewalk in a strip mall shopping area.

It took every ounce of ummmmphfff in Matthew to be able to
get into the groove (and caught me quite by surprise) not
to mention was very funny.

In order for him to make more than one snort he has to put
his whole body into it...his shoulders move up rigidly, his
head jerks and his whole body becomes a snort, snort maker.

Learning this new skill (and it is a very important skill)
*nods and grins* is something he worked on all summer long
and it typically happens at home on a whim.

But last Thursday we went to the market, Mama, Dad and Matthew

And.....



For whatever reason (of which I do not know)...it was
"snort snort" practice time for Matthew.



The grocery cart train...

Matthew pushing the cart, practicing his "snorting" extravaganza

Mama the caboose, laughing like a little kid

And Dad the Engineer, pulling the chugga chugga "snort
snort" giggling grocery cart down the aisle, saying
"you guys are crazy."

I caught the grown up in me saying out loud, through my own
childish chuckles, that there is a time and place for snorting
and the market isn't the time or place but it quickly became
apparent that the little kid in me (of which I am quite fond)
won and I relished in the fun and amusement.

He snort, snort snorted down the aisle, to the bakery
section where Dad bought a little cake and continued right
on practicing through the check-out.



The girl grocery clerk with dark hair and a big smile, who
rang up our groceries, was so sweet.

I told her (amidst Matthew the snorting machine) that he
just learned how to do this. She replied, with a smile,
"He's having fun."

So there it is, a little "oink oink" humor.

I guess you could say Matthew is a little ham.

But he is OUR little ham and I'm super proud of Matthew and
everything that he learns, even when he innocently has the
urge to practice learning right in the middle of a grocery
aisle.

Those silly little snorts with a mixture of Mama's laughter
and Dad going along for the ride made for a very good day
that just happened to take place in a small, local, friendly,
family owned market....one of our favorites for fresh fish,
but now it will forever hold a very special memory of a
certain sweet, little ham.


Oh Sweet Holidays!

Yes, it is official. We have Christmas music playing and our tree is up! Isn't it too early, you may ask? No, it is not too early, not when almost a year ago Andy and I hugged our girls goodbye and we left to go to Ukraine. Andy got to come back after three weeks. We had been promised that we would be back home before Christmas (now we know better about promises in the adoption journey!) and he got the girls to set up the Christmas tree. However, Nina and I did not walk into our home until January 3rd of this year. Thanksgiving had come and gone, we knew that, but so had Christmas.

As we were setting the tree I realized that simply openinng the boxes and seeing my girls decorate the tree was a healing experience. Our time in Ukraine is still painful to think about. We took an emotional journey like no other we have ever expereinced. But this year, we are home!

We are ready for Thanksgiving, and we are having Christmas for a long time! So let's blare the music, let's sing our songs, because "It's the most wonderful time, of the year!"









Reece's Rainbow Christmas 2010

You can make a difference!


Fairweather friends
















Fairweather friends
By Lisa Young

They say that friends come and go in our lives. We hope they’ll be there for the difficult times, but that isn’t always the case. This story is about a friendship that could not survive the birth of my child with special needs.

When I found out I was pregnant with my first child, I was thrilled. I couldn’t wait to tell my family and friends the great news. Everything seemed to be going well until I hit the 20-week mark. It was at this point that I found out that the pregnancy was not going to go as well as expected. Routine bloodwork showed that I had been exposed to parvovirus in my first trimester. This revelation resulted in emergency ultrasounds, more bloodwork and a referral to the High Risk Clinic at Mount Sinai hospital in Toronto.

During this time, I found out that my best friend since high school was pregnant. This was something we'd both hoped for. We had dreamed of being off work together and having our children play together. While my friend’s pregnancy was ‘perfect,’ mine was full of stress. I became resentful of my friend’s complaints of being tired, heavy and sick with her ‘healthy’ baby. It was hard to hear this when I was just hoping my baby would make it until the 30-week gestation mark. I guess that’s when our friendship started to unravel.

My beautiful baby boy Tai (in photo above) was born by emergency C-section in February of 2004. I did not get to see him. I did not get to hold him. He was whisked away by the emergency team of doctors and nurses and put on a ventilator in preparation for surgery. We spent the next three months in the NICU at SickKids and were extremely well taken care of by the doctors and nurses. During this time, some friends and family came by to bring us food, meet Tai and give their support during what was an extremely trying time. All we needed was to know that people were around if we needed them.

My best friend never made it down to see us or meet Tai.

When we got home from the hospital, I spent the next few months in and out of doctors' offices for updates, check-ups and to resolve continuous problems with Tai. Gradually, over time, my friend gave up on me and our friendship dwindled away. I couldn’t spend my days at the playground like we had hoped and I barely had time to join playgroups we had planned to go to together. I had to cancel many playdates. Most of my maternity leave was spent in hospitals and doctors' offices.

Here is what I have learned:

1. Sometimes friends don’t know how to deal with situations like this. Instead of being supportive, they back away. That is their issue, not yours.

2. True friends will try to help. Embrace it, and say thank you.

3. It is okay to be selfish. My priority was my son, my husband and myself. I didn’t have the time or energy to handhold a friend, when what I needed most was to have my own hand held.

4. Understand and forgive. You can’t go back.

5. Try to be a good friend yourself.

After five years, I have reconnected with my lost friend and it is nice. We will never get back the deep friendship we once shared, but we can move forward and stay in each other’s lives on a smaller level.

Caregiver health affects us all, researchers say
















Many of you asked for more information about the national roundtable on the health of parents of kids with disabilities last week. At the meeting in Ottawa we heard an overview of research to date that’s been funded by the Canadian Institutes of Health Research. This research was conducted by Jamie Brehaut, Dafna Kohen, Peter Rosenbaum, Lucy Lach and their colleagues. Following is a summary provided by Jamie. Thanks Jamie!

Caregiver health affects us all, researchers say
By Jamie Brehaut

The health of caregivers is increasingly important from a policy perspective. For example, it’s apparent that parents who care for their disabled children at home are enormously valuable to the health care-system, which would otherwise incur considerably more cost providing institutional care. So understanding how to help keep caregivers healthy and providing them with tools to provide effective care makes good fiscal sense. Furthermore, it's becoming clear that caregivers of severely disabled children are only the tip of a very large iceberg. Childhood chronic conditions can have implications for caregiver health, which may put as many as 25 per cent of Canadian parents at risk for caregiver-related health issues.

In one study of 468 families of children with cerebral palsy, we compared the health of these parents to a random sample of Canadian families. Caregivers of children with CP (regardless of degree of disability) were at greater risk for a wide range of psychological and physical health problems, including emotional problems, back problems, headaches, asthma, heart disease, and many others.

In another study using Statistics Canada datasets, a broad definition of childhood health problems that included nearly one-quarter of Canadian families with young children showed that caregivers of children with these broadly-defined health problems were about 2.5 times more likely to report both depressive symptoms and chronic physical conditions.

While the majority of studies measured caregiver health at one point in time, we used Statistics Canada data to measure the health of caregivers over time, every two years, for a period of 10 years. Results showed that instead of compounding over time, health effects remained relatively consistent. However, caregiver health was affected by the complexity of the caregiving situation, with caregivers of children with more complex health problems consistently reporting poorer health.

The results of this work suggest that caregiver health is a public health issue, affecting a much broader range of caregiving situations than was previously thought, and potentially affecting as many as one in four Canadian families. There are important psychological and physical health implications of caring for a child with a long-term health problem or disability. And while there are also clear positive aspects of being able to provide care for a loved one, we need to know more about how to set up the conditions for successful caregiving, and whether some challenges parents experience can be prevented with better services and public policies.

This work has spawned several ongoing projects, including one that will use health administrative data to better understand the factors that contribute to caregiver health issues, and another focused on understanding successful parenting strategies in families of children with complex lives.

Giving Thanks and Giving Back

It's that time of year- when my blog is quiet but I am typing up a storm on Facebook. Why? It's Thanksgiving- specifically, time for the NICU Thanksgiving.

I'm a holiday nut. I love Halloween, candy and cute kids in costumes. I like black cats in pumpkins and trick or treating. I love Christmas, snow, hot coco and nativities. I love driving around looking at lights and Christmas  music on radio stations.

And, yes, I love Thanksgiving too.

Like so many people, Thanksgiving is all about the smells and bells. The smell of turkey in the oven, stuffing the bird with my mother and making rolls... always, always Sunshine Rolls. It's about the Macy's Thanksgiving parade on TV and our current "family of choice" (ie, close friends) coming over for more food than we can eat, displayed proudly on my grandparents china.

Through our married years, we've split up Thanksgiving; one year, at my parents house, the next at the in-laws, occasionally hosting our own. In 2007, I convinced Adam to make a turkey on the grill,  just like his mother had made for several non-Thanksgiving occasions. He did and I was hooked. From now on, I said, Thanksgiving will be at our house because I WANT that lovely, moist, succilant grilled bird.

In 2008, though, it didn't happen. Thanksgiving was the last thing on our mind, an after thought. Georgie was still in the hospital and I was on auto pilot, running between the house and hospital. My in-laws told us they would host that year and we gladly accepted. You could see the hospital from their backyard, so I would be able to pop in between feedings and pumpings.

It was Adam who had the first idea to bring Thanksgiving TO the NICU parents. We were talking about how lucky we were, with Georgie being big, getting healthy and having the easy preemie ride. There were other people, we knew, hours away from friends and family, having to chose between being with their baby or being at home. People were living out of hotels or the Ronald McDonald House and while the cafeteria was servings dinner... well, mashed potato flakes anyone? Yeah. Me too.

I thought it was a great idea and even though it was VERY last minute, the social worker scrambled to get us a room and spread the word. I have no idea how many people ate Adam's grilled turkey, green bean casserole, stuffing and BBQ sauce "gravy" but we fed people- and there were leftovers for the next day.

In 2009, we wanted to do it again. No one should have to chose between a nice meal and their sick baby so, of course, a nice meal should come to them. We donated the cooked turkey and, through FB, got other parents of NICU graduates to donate everything else. We had sides, stuffing, rolls, butter, desserts, drinks, turkey,,, and more love than you can count.

It's 2010 and our third Thanksgiving dinner to the NICU. We're still fine tuning the process. I called the NICU today to finialize the time/location and am praying that everything goes smoothly. Once again, Adam will be up early to cook the bird and I will take everything to the hospital. I set up and leave; in a few years, I hope to stay to serve the meal. In many years, I hope to take the children with me. They need to see where their brother's life was saved; Georgie needs to know the people who took care of him when he was sick.

Thanksgiving at the NICU isn't about us giving back- it's about all the parents remembering what it was like spending days, weeks, months at your child's bedside, hoping and praying they would come home. It's about remembering how lonely a nd isolating the NICU can be and just needing someone to talk too. It's about remember the need for good soul food and good souls... for knowing that there is life at the NICU and you want to show those SuperBabies in Training what it looks like. We're giving thanks for our child and their medical caregivers and giving back what was given to us. It's a small re-payment, but a start.

A tiny start, just like our children. But a start, a shot, a chance, one day to make a difference... just like our kids had.