Adventures in Moving

Think epic adventure. Grand scenery, wind blowing, trees swaying, and your very own soundtrack playing as you step into a new home, which turns out to be Cinderella's castle. Got that picture? Because yeah, moving is NOTHING like that!

Adventures in moving for the Stumbo family included lots of moments where we stood around a room packed with boxes, with a few hundred more things to do and still wondering in despair, "What am I supposed to do next?" But we got it done.

It began with great blessings and also great sadness. Our church family gathered around us and helped us. Some by taking our girls so we could get things done. Others by coming and helping us pack boxes. Still other were brave enough to come and tackle a few house projects that we had put off for...many years. You know when you buys a house and you think, "We can fix that later" but it never gets done? Yeah, those types of projects. And when the projects are all done you are sad that you could have lived in a really nice house. But the real great sadness came as we had to say good-bye. We have many dear friends that have become family, people that we got to do life with and saying goodbye was so very difficult. Yet, how sweet that God extended our family and we now have great friends for a lifetime.

Lots of sweet friends came and helped pack our moving truck, and to top it off, two of our friends came with us last Monday when we moved to help unload. But like I said, moving comes with many adventures.

1. As we arrived to our new home, Andy and I had to run to the bank and close on the house. By the time we arrived the truck was unloaded. Yeah, pretty sweet, yet, it feel like we should have been here for that part.

2. Words to the wise. If you are moving and have 3 children ages 5 and under, it would be wise to hire a babysitter for the day...just saying.

3. My biggest fear is to loose Nichole. You see, children with Down syndrome have this tendency to run and wander. You can imagine the fear I felt when I heard a man yelling, "Did somebody loose a little girl?" I had just left Nichole for a few minutes with a bag of chips and watching a show, she was happy, so I ventured to help Ellie get something ready in their room. Not even 5 minutes and Nichole had left the house...easily, since the doors were taken off so we could move furniture inside. Nichole made it 2 blocks away until a nice couple biking spotted her and stopped her. The wife stayed with Nichole and the husband had been trying to find the parents. I cannot describe how it felt. Had they not found her, we would have had to call the police on our first night home. The doors were installed shortly after that!

4. Words to the wise. If you are moving and have 3 children ages 5 and under, it would be extremely wise to have a babysitter for the day. Wiat, did I say that before? Well, I think this is worth repeating!

5. Yes, even in a bigger town people might still know ahead of time who is moving next door. We have met a few neighbors who have asked if we are the "new minister" or the "new minister's wife."

6. You might find out that grocery shopping is in fact an adventure. One worth getting excited about. This town has a pretty sweet grocery store like no other I have seen before. Think warehouse, think choices, and think huge!

7. It is hard to get settled when you have little girls, especially 2 that require extra attention. While the process is slow, after a week all the boxes are almost gone from the upstairs. Yes, our solution right now is, "take it to the basement" but at least our main living area is looking pretty decent.

As for some prayer requests.

-Andy begins his new job on Wednesday.

-Please pray that we sell our house back in Iowa.

Pumping tips

A little late but NPN has some pumping tips for you!

Friday was a bad day

Friday was straight out of "Alexander and the Terrible Horrible No Good Very Bad Day". Adam had been gone for a few days and Georgie was all out of sorts. He got home late Thursday night and was excited to see Daddy Friday morning.

"Excited"= "I'm going to cry and throw a fit because YOU LEFT ME!"

Georgie was NOT HAPPY Friday morning. Adam was home all day and Georgie did not want Daddy to walk Joseph to school, sit at the table, go with Mommy to playgroup, etc. All he did was cry and scream and say one of his few words- dada. I finally dragged him off to playgroup so Adam could run errands and have alone time.

While driving there, I was pretty upset. The mom who was hosting has children with special needs so I knew if I walked in and started blubbering, she would get it. She'd like I was nuts, but she would get it. I stopped to get coffee and a smoothie for the kids. The people were very nice and placed the smoothie in two different cups for no extra charge.

When I walked to my friend's house, I was greeted by a group of kids who brought the older two in. One of the boys began chatting and playing with Cole. I sat down and took a deep breath. We didn't need to leave early for preschool that day, so I stayed as long as I wanted and chatted with some of the other moms. Camille found some girls to play with and enjoyed their company.

Friday was more  meltdowns, although he did get a nap in. He's now refusing to sit at his chair to eat and will only eat, maybe, if he sits in our laps. It's hard to feed myself, Cole and balance Georgie while he eats.

Adam worked outside alot this weekend and we talked some while I was running after the kids. We both agree Georgie needs to keep working on speech but that he also just simply needs a way to communicate- ASL, iPad, picture system... Adam added in "grunting and pointing" and I said, "How is that different from every other male?"

Seriously, sometimes I think about the future and I worry about him. How can a kid who has trouble talking give a speech? If he never learns to talk, how will he interact with strangers who do not know ASL or whatever system he uses? He doesn't sign now, how can we get him to sign? What will happen if people pick on him?

Then I take a deep breath, remind myself to pick up the kid clutter and not to think beyond the fall...

Some scars fade, some never will







































I’m excited to announce a new partnership with Holland Bloorview’s family advisory committee (FAC). The FAC works with staff to ensure that the needs and priorities of families shape Holland Bloorview services. In order to build the capacity of our blog, a number of FAC parents have agreed to participate as BLOOM bloggers. I’m excited to introduce our first FAC guest blogger, Lori Beesley. Lori and I learned we had a lot in common a couple of years ago, when she called me about promoting the Fragile X Research Foundation of Canada. She used to work with my brother and we both have sons with intellectual disability. Thank you so much Lori for sharing here! Louise

Some scars fade, some never will
By Lori Beesley

I will never forget the moment our son Mitchell (above) was born.

I expected to hear: “It’s a boy!” or “it’s a girl!”

But that’s not what I heard. Instead, our doctor quietly, but with great urgency, told a nurse to “Get the pediatrician on duty stat!”

Our son had a small birth defect, she said. I saw her put her finger into his misshapen mouth and she told us that he had a cleft lip. It seemed that his palate was intact and we should be happy about that, she said. Happy about a birth defect? I wasn’t.

Every expectant woman says she hopes her baby is born healthy. But really, isn’t that our expectation? There are plenty of statistics at your disposal showing that not all babies are born ‘perfect.’ But you push those numbers out of your mind and focus on cute bedding for the crib, teddy bears and what stroller best fits your lifestyle.

Our son, Mitchell, had two facial surgeries to repair his cleft lip before he turned five months old. By now we knew all about cleft lips and palates and we were happy that his palate was intact. However, as I held him in SickKids Hospital, counting all those stitches on his tiny face and lip, I felt somehow that I had failed him. I had taken good care of myself before and while pregnant, ate well, taken folic acid and prenatal vitamins, but still, the unexpected happened. I remember thinking “This better be the worst thing he has to go through as a child!”

After his second surgery, Mitchell wore a plastic spacer in his nose for six months (to help form nasal cartilage). It was held in place with a strip of surgical tape. I will never forget people seeing the stroller and saying “Oh, can I see your baby?” followed by the looks: shock, surprise and discomfort. More than once, people said: “Oh my God, what's wrong with it?” and looked at me with disdain. These reactions always took me by surprise, because while I was aware of his facial difference, I didn’t define him by it.

In the months following Mitchell’s surgeries, we were forced to recognize that he wasn’t meeting his developmental milestones. We could no longer deny his delays or attribute them to surgery. We began to investigate and the next year was filled with many tests. As a last-ditch effort to discover the cause behind his significant developmental delay, we were sent to a geneticist. She performed a simple blood test and told us to come back in six weeks.

Two days after Mitchell’s second birthday, we sat in the geneticist’s office while she told us our son had a genetic developmental disability. She said it was life-long and there was no cure. Mitchell was diagnosed with Fragile X Syndrome.

I remember feeling numb, guilty, terrified and relieved all at once. The guilt came from knowing I had carried the Fragile X gene that was passed to Mitchell. We had no prior knowledge of it, or any family history, so I quickly had to ‘forgive’ myself and think – you know what, you passed along your brown eyes and you didn't control that, so this has to be thought of in the same way. The terror and numbness came from entering the vast Fragile X and special-needs world. We suddenly had a whole additional layer of parenting added to our lives. The relief came from knowing we had an exact diagnosis and could start to do something – read, educate ourselves, seek out targeted therapies, meet people with expertise in this area and know what to expect. Knowledge is calming, and makes me feel in control.

Mitchell’s childhood was suddenly filled with therapies – speech, occupational and physical – and countless doctors’ appointments. His life and our own changed forever. No simple surgery could fix this.

It took a while to stop seeing the disability and start seeing Mitchell again. It struck me one day, as I filled out one of the forms that were as much a part of my life as changing diapers, that I thought of myself as the mother of a ‘special-needs child’ and not just Mitchell. Was I defining my son only by his disability and not looking deeper? Had I become like one of those people who said inappropriate things after peering into Mitchell’s stroller? I vowed that day to stop seeing Fragile X before I saw Mitchell. There were other things about Mitchell that were unique and precious that I needed to focus on.

Mitchell was still our son who laughed when you put a blanket over his face, was content to lie on our bed and watch the ceiling fan, and loved to play with toy trains and cars. He’d scoot around the house on his bum and close all the doors. He enjoyed playing with pots and lids. He’d squeal with delight anytime he was around water. Mitchell was still adorable, curious and ate and slept well. My son’s smile could still light up a room.

My son’s Fragile X is largely invisible in that there are no physical characteristics at birth, or even during early childhood. Even when those characteristics manifest themselves around puberty, they can be subtle and vary: a longer face, ears that stick out, a pointy chin or a high forehead. It might sound strange, but there have been times that I wished there was something about Mitchell that labelled him – like a pale purple X on his forehead.

Perhaps then others wouldn’t look at him with puzzled faces when he acts years younger. They would understand why he wanted so badly to ride in the grocery cart shaped like a rocket at age 10, or flaps his hands with excitement while waiting in line for an ice cream cone.

At times, I want to rush over and explain about his Fragile X. I don't think I do this out of embarrassment, but rather to raise awareness. So many people have said to me “He doesn't look disabled” and I say "Yes, this is what it looks like" and try to have a discussion.

I feel like a part of my job as Mitchell's mom is to help to remove the stigma around intellectual disability. I can't be in the lab, finding a cure, but I can educate, create awareness and help others. I owe that to him. That is how I cope, how I feel like I can do something positive. At other times, when Mitchell is acting inappropriately in public, I just go with it and really don’t care what others think. I just want to be his mom and not feel like I have to educate everyone.

The most frustrating thing about Fragile X is not knowing what it's like to be Mitchell. If I could just be Mitchell for a day – or even one hour – and get inside his head, I believe I’d be a much better parent.

So many times I don't understand why he does what he does and that’s hard to deal with.

I don't get how he has to have certain things lined up just so, like the napkins in the napkin holder, but will then scatter his movies all over the floor and not care. I don't get why we had to teach him to walk on grass when he was little because of his bad sensory issues, yet he'd attempt to walk through, rather than around, a prickly juniper bush. I don't get how he can memorize an entire movie after watching it only a handful of times yet it took him years to learn his colours. A friend who has a daughter with an intellectual disability recently told me that her daughter is a study of ‘wonderful, frustrating contrasts’ and we laughed together because that description says it all.

Mitchell is now 16-years-old and his cleft-lip scar has faded to the point of being undetectable. But Fragile X Syndrome, while largely invisible physically, is a part of our lives forever. It won’t fade with time. I used to say that knowing what I know now, I would trade a simple cleft-lip surgery every year if it meant no more Fragile X in our lives. Isn’t life ironic?

Six month family service meeting

On Tuesday, Georgie had his six month family service evaluation with our speech therapist and family service coordinator (FSC). I knew it was coming but it was a bit of a surprise when the SLP and FSC walked in together. No worries- we were home anyway and it took place during our normal speech time.

Overall, the tone was very positive. He has made great strides. He's still not a fan of our FSC but he's not rude; he just ignores her. He doesn't say hi or run up to her like he does out SLP; he just goes about his business like she isn't there. He has a healthy dose of stranger anxiety, unlike his sister who could use a dose of "stranger danger."

Georgie now makes eye contact and says some words when prompted/excited. He is jargoning and instead of it being one sound (duh) it is now two or three sounds (something like "uh duhduh/ uh dada"). He's now pointing to body parts when prompted. His receptive language is spot-on for his age. Since we have identifiied and began addressing the SID, I've seen an overall improvment in his behavior and language.

But we still have very hard days. Friday was one of them. He is still delayed in speech, social and sensory. I asked about preschool and told them to talk slow, because I only have experience with our private, parish preschool. The FSC said that, legally, the school system does not have to do anything with Georgie until the day he turns three. However, they begin the process of phasing him out about three months before he turns three, which is at the beginning of the school year. Sometime in Oct our SLP will go on maternity leave. Knowing Georgie, I think it will be best to phase him directly from Infant and Toddler Service into the school system. It looks like that unless lightening strikes, he will begin preschool shortly before he turns three.

Mentally, I am trying to adjust to this. I thought I was going to have a year with just my little dudes before I had to deal with preschool again. He's leaving my nest a little earlier than I would like. I know he's two and a half! but because he is still in diapers and doesn't talk much, he feels like he is so much younger. I didn't cry when Joseph went to preschool or kindergarten. When Camille went, I was so happy for her because she was so ready and excited. But I think I may boo-hoo a little over Georgie. Although I could have happily kept the older two at home for preschool and still met their academic and social needs, Georgie is going to school early because there is something I can't give him. I know I didn't fail him but I feel like I did.

As for Georgie, I think he will need some time to adjust but I think he will do well. He will be at the same school as Joseph and Camille. He loves going up to the school and seeing the big kids so I think he will have a blast putting on his little backpack and walking to school every morning. We know one of the preschool teachers well, as her husband attends our parish and Adam is on the board with her. I've been picking her brain already- yes, I am that mom. :) I think the peer model program will be good for him; buddies who model language will be awesome. Plus, I think it will be good for Cole. They are so close in age, I can see Cole not wanting to speak better than his older brother or picking up "bad language habits" from Georgie.

Oh, and the total perk of this? Because he will be one of the special needs kids, he does not need to be potty trained AND they can work potty training into his IEP goals! Sweet!

Leaving an (adult) child for the first time

Another great post on the NY Times Motherlode blog today.

A mother writes about leaving her adult son -- who has autism and a seizure disorder -- for a week's trip to Paris to celebrate her and her husband's 30th wedding anniversary:

At home, I am the all-consumed mother of a disabled child. In Paris, I become an art and history lover. A bon vivant. A flâneur — one who saunters. In Paris, I feel young... We have never left Mickey for a week. He has left us, of course, to go – reluctantly – to a special needs summer program for three weeks. But now he is the one being left. I shudder, thinking how often he asks me, “Do people come back when they die?”

Ignoring 'typical' siblings

The New York Times Motherlode blog has an interesting piece today about a family with 4-year-old twin girls who are conjoined (right).

Ignoring 'typical' siblings questions how parents of children with disabilities or medical problems balance the needs of their other children.

You may want to leave a comment about how you do just that -- or try to!

A much longer piece about the twins is the cover story in this weekend's New York Times Magazine. Louise

Hopeful parents, Ben's new love and links
















I'm over at Hopeful Parents today: A letter to myself.

Guess what? Ben is in love. With Jessie, the red-haired, cowgirl in Toy Story 2 and 3. He likes to listen to her sing that sad song "When somebody loved me" and carries an enormous Pixar coffee table book around so he can look at her picture. He also likes forwarding the Toy Story movies to the places that correspond with the photos in the book. And although he finds typing an e-mail painstaking, he is always up for writing something about Jessie. Usually: I love Jessie. He thinks she's nice and funny and brave.

I have a meeting on Friday with the folks from the Toronto Catholic District School Board. I hope it proves fruitful.

Here are some interesting links:

Our daughter's Down syndrome has taken us on a beautiful journey

Developmental disability affects 1 in 7 US kids
The Pediatrics journal article that covers the study quotes it as 1 in 6.

Penalized for working -- disabled lost 50 cents on every dollar earned

The book
BLOOM guest blogger Jen Johannesen is working on a book. I love the themes she's exploring:
Since Owen's death, I have been capturing some of our stories in order to share these experiences with fellow Canadians. Although Owen was an extreme example, I believe our story touches on healthcare themes important to Canadians, including system navigability, controversial application of technological intervention and the growing burden on the patient to case-manage themselves.

Morgan's Wonderland caters to visitors with special needs

Summer 2011- Goals

Summer Break begins next week. Joseph is full into seven year old boy attitude (aaaahhhhh!) and I predict the kids will need to be busy in order for me to stay sane! I'm looking forward to summer, though. Should be lots of fun!

Goals:

1. Have the kids do "school work" 30-60 minutes a day- reading out loud, silently, some math worksheets and writing. I'm putting Georgie in this- he needs to work on his sensory diet and speech this summer.

2. Get to the pool often- either our pool or the pool at the gym with the splash park.

3. Have a daily prayer/ rosary time with the kids- and LOCATE my Rosary!

4. Get back to the 4 o'clock clean up and prayer time- see number 3.

5. In July, start swimming in the morning again.

6. Keep working out and working on loosing the baby weight. I guess it is toddler weight now, huh?

7. Take a day trip every week or two to see historic houses and Civil War battlefields in Kansas. I love old houses and eating in new resturtants or picnics; I even like visiting graveyards, which Adam thinks is totally nuts.

8. Survive!

Brothers



Inclusion part two

I thought about my my last post over the weekend. Because it was written under the typical time constraints, I can see that Gina's comment was unfairly positioned as the one example of "inclusion -- or else" -- when in fact I was writing about a number of experiences I've had or discussed with other parents. It was the comments that followed Ellen's post about the merits of special-needs or mainstream camps that made me feel parents can be strident in their views in a way that doesn't reflect reality for some families.

When I said I contacted a mom of a daughter reaching adulthood after interviewing filmmaker Dan Habib about inclusion, we had a much longer dialogue about how we've had to mix segregated and inclusive activities for our teenage children. And this mom talked about how she thought it was realistic to assume she'd have to do the same when programming her daughter's adult life after high school.

This might involve combining some volunteer work with recreation activities and a day or two of a more traditional sheltered workshop. She questioned whether it was possible to set up and manage five days of inclusive activities without relying on some existing services (short of leaving her job and making her adult child's life a full-time job, which some parents do).

We both sensed that if our children attended a segregated day program as adults -- even part-time -- that parents who had created only inclusive activities for their adult children would view this in a negative light.

And I think the important point here is that parents within the disability community feel judged by others based on the choices they make for their children -- instead of supported.

I've felt the same criticism from parents whose children have gone through the school system in a regular class. There's a sense that parents should fight for full inclusion at all costs -- even if it means their child wouldn't get the supports they need to be successful or safe.

Galen, a pediatric occupational therapist for 30 years, single mom to 10 adopted children with a wide range of disabilities, and BLOOM reader, has written about this in The inclusion debate

Cloth Diapering: Rants, Raves and this Really Is My Sister's Fault!

Before we even became pregnant with Joseph, I knew I wanted to cloth diaper. I remember my mother using giant prefolds, pins and pull on plastic pants with my brother and sister and I knew that it was better for the earth. I also remember, circa 1987, commericals for the "new" girl/boy diapers that were pink or blue. My sister was a baby and I BEGGED my mom to buy the pink girl diapers for her. She only used disposables when traveling and relented when we were going to be visiting family and friends for Thanksgiving.

That Thanksgiving, my infant sister was a giant pain. I was eight and I remember her crying and crying and CRYING and NO ONE could figure out WHY! My mom and her friends took turns playing "pass the screaming baby" and escaping the noise. (I think the kids were huddled in the kitchen, eating, and rolling our eyes.)

Finally, my mother went to change her diaper and my sister had huge chemical burns all over her bottom. The chemicals from the pink disposable diapers had literally eaten the skin off her bottom. My mother wrote the company and they confirmed that they had been recieving complaints about the pink/blue diapers. As the months went on, they paid for her to see a dermatologist and have her skin tested to see just what chemical she reacted too. I actually remember seeing the patches on her bottom and going into the dr's office. What the results were, I don't know and I don't know if they ever DID get definate results because we moved and my mother once said something about "not wanting to put her through THAT again."

(Frankly, I don't think any of us wanted to go through THAT again!)

Obviously, that left an impression on me. Not only do I like the eco benefits of cloth diapers but the chemical burns? Yeah, they skerred me.

When we found out Joseph was coming. I told Adam I wanted to use cloth.

"It saves money in the long run."
"But it costs more in the beginning," he countered.

"It's better for the environment."
"Don't really care."

"The kids potty train earlier."
SOLD!

After about 18 months of cloth diapering, we finally settled on a system- prefolds and fitteds with covers for the newborn stage and pockets thereafter. I prefer pockets with snaps.

I've cloth diapered four newborns, four toddlers and two in diapers twice. This is the first time, though, that I have had TWO toddlers in diapers and, let me tell you, the poop is killing. (Actually, it is the CORN that is killing me but hey.) I'm not sure the diapers got clean this last wash cycle, so I am washing the covers again.

Do diapers wear out? I mean, one of the benefits of cloth diapering is reusing the diapers and saving money but I have had Fuzzi Bunz in use since 2005. They have had a six month break between kids. That's a dang long time for something to get that heavy of use and be washed multiple times a week.Alot of my other diapers were bought used too, so they aren't spring chickens either.

Is my washer wearing out? It's seven years old and broke down last winter... I'm wondering if it isn't washing anything as well as it could.

That said, I'm kinda tired of dealing with poop, putting it into the potty and scrapping it off diapers. I have liners, which you can flush when dirty and re-wash the wet ones but a) I keep forgetting to use them and b) they don't rewash well and I have to deal with their soggy mess in the washer.

I tried Rockin' Green recently and I don't think it works any better than Charlie's Soap, which I use on all the clothes.

Any other tips? Advice to get me over my runt? I honestly enjoy cloth diapering but the constant stuffing, scraping, washing, washing, washing is wearing on me.

No more preschool???

The Princess had her last day of preschool on Friday. She is now a kindergardener in waiting! She is so excited to go to "big" school. I know I won't be able to keep her in the house that morning! She is riding her princess bike like no one's business and we even took a bike ride together. I hope to take her on one again soon- we had fun!

Plate Spinner

Cole has a great future ahead of him as a plate spinner:

He took his first solo step at Joseph's baseball game last night! He let go of the push car and took a step. I cheered for him and I swear he said, "did it!"

I got a message in my in box from a baby company entitled "your 14 month old." Well, he's not 14 months for another two weeks but, wow, he really is growing up so fast! Not my baby-baby anymore. I predict he will take off walking at the highly un baby proofed hotel  in a few weeks or at his great-grandparents house with all those enticing nick-knacks.

He's outgrowing his shoes so I got him a pair super cheap at the local cloth diapering store and then another pair on-line, as the first pair is big. He scored some new outfits since he doesn't really have many summer outfits and, of course, they match or coordinate with his brother's. He loves, loves strawberries and sits in his chair saying, "muh! muh!" (more! more!) whenever we eat. What a goofy kid. He still can't drink from a sippy or straw cup and my  normal tricks (like using a juice box or a sippy without the valve) don't work. I'm not sure if he is just a goofy kid or if it relates to his tounge tie but I hope he drinks out of a cup soon! Holding the open cup for him is messy!

Now if only the little turkey would stop teething and sleeeeep at night!

Keep scrolling...

Lots of bloggy updates... keep reading...

But! Are you smarter than Jesus?

"But as for that day and hour, nobody knows it, neither the angels of heaven, nor the Son, no one but the Father alone." (Matthew 24:36)


I remember a priest once giving a homily about the end of the world. He said that he used to frequent a street fair every week. He loved their fried chicken and he would go to get the chicken, visit with people and listen to live music.
 
While he was there, a man was parading around with a sign: "One month until the end of the world!"
 
"Three weeks to the end of the world!"
 
"Two weeks until the end of the world!"
 
The priest would watch him marching around with his sign, handing out pamphlets and telling people to be saved or they would be left behind.
 
Finally, the sign read that there were just a few days until the end of the world. My priest walked up to the man and said, "Wow,  you know the end of the world is coming!"
 
"I do," said the man.
 
"You must be very smart to have figured that out," said the priest. "In fact, you must be smarter than Jesus."
 
The man was GREATLY offended because HOW can you be smarter than JESUS?
 
"Well," said the priest, "Jesus said that He doesn't know when the world will end. It's right there in Matthew. Jesus said that only the Father knows when the end will come. You must be smarter than Jesus to have figured it out."
 
The man left, the priest kept eating his chicken and the world didn't end.

Georgie's Weird Diet

That's what more, ahem, "mainstream" people call our experiment.

(I actually hate the term "mainstream" as opposed to crunchy but there you are. In this case, "mainstream" refers to those people who think you cannot possibly be allergic to milk and, if you are, you have to practically go into anaphlatic shock to prove it- and they have never heard of gluten.)

I should begin this by saying that I have heard that taking kids off gluten and dairy, including casein, helps with symptoms such as ADD/ADHD, Autism spectrum, all kinds of allergies and the like. As long as the parents do their research and make sure the child is eating an otherwise well balanced diet, I personally see nothing wrong with giving this a shot. It's better than loading a child up with drugs and more drugs and certainly can't hurt.

But how does dairy cause ADD and Autism? It doesn't. The theory is that an intolerance to anything (but diary and gluten in particular, for a variety of reasons) can make a child feel ill, so they don't act like a typical child. It's kinda like a person at the beginning of seasonal allergy season. You feel tired, groggy and walk around in a  fog, not wanting to do much. Then you take meds or treat it however you treat it and suddenly you are at peak performance again.

(Yes, that is a very simple explanation.)

I don't have alot of support for Georgie's diet. Dairy subs and gluten free items cost alot of money. I looked at the bread at Whole Foods and a loaf of gluten free bread is 5-7 dollars and it is smaller than a normal loaf. If we all went dairy and gluten free (which would make my life easier) we would likely spend upwards of 20-30 dollars a week on bread alone. Buying all the different flours would likely cost as much, plus it would take alot of time to make all the bread and bread items, like muffins, for our family. That's why I don't make our bread now; I know how to do it and I love naking bread but I simply do not have the time to make that much bread every week.

Then there's the taste. The gluten free bread was okay. The brand I bought was sweet and would make wonderful french toast. The pancakes were "meh" and so was the pizza dough, although Adam liked it. I liked the pricey GF pasta and even the cheap, gluey stuff was okay. I think it's because I cook a great (DF) meat sauce that could make rat poison taste good. Oh, and the noddles work great in this new Asain beef and broc and noddles dish I tried... but a little pricey for something that would be awesome with rice too.

But, if I am being honest here, I do NOT like the texture of many gluten free items. If I had to go GF, I could see myself buy the odd box of pasta or maybe some wraps for sandwiches. But bread? I will eat anything that holds still and I do NOT like the texture of most GF items. Alot of people were telling me that some things are better GF... not buying it. Nope.

Adam finally asked me to just make things that are naturally GF. Some of the cereals are pretty good, like the GF Chex cereals. Cole loves the GF "cheerios" and I think I prefer those for babies, since they are so melty. But other than that? I'm going to limit his exposure to gluten but unless we get a firm dx of gluten intolerance, I'm going to need a hard kick in the pants to spend 30 dollars a week on grainy GF bread.

Now dairy? I can do this. Cole and I love the So Delicious coconut milk vanilla yogurt. All of us love their chocolate dream coconut milk ice cream. The DF GF ice cream cones taste just like normal ice cream cones. I bought some DF "cheese" alternatives and I don't mind them. Adam can't stand them but I think they taste alot like velveeta. I'm not sure what that says about velveeta, but...

I use alot of Earth's Best "butter" and I prefer it in baking. I made sugar cookies with it and they turned out better than cookies made with real butter. I notice a slight after taste, almost like margarine, but I can't tell a difference in baked goods. Almond milk works fine in baking and Georgie drinks alot of it. That makes up the bulk of his dairy, so by simply replacing cow's milk with almond milk, I've replaced 95 per cent of his dairy intake.

Do I think it has helped? Well, he's still not caught up but he has made great progress. Is it hurting anything? Certainly not. His skin is nicer, he smells better and he's grown several inches. I plan to keep up with the low dairy/gluten until we leave for vacation in a few weeks and then let him have at it. It would be hard to keep him on a special diet while we travel anyway and will serve for a decent "Testing ground."

Inclusion -- or else!
















Months ago I wrote to a BLOOM reader who has a daughter reaching adulthood. I had just done an interview with filmmaker Dan Habib about inclusion and felt horribly guilty that Ben was in a segregated school.

“Ah yes,” the mom responded. “The inclusion – or else – debate!”

Now Dan never made me feel judged because my son isn't integrated. He understands the barriers. But too often I find people who promote inclusion have zero tolerance for anything less than 100 per cent.

Last night, Ellen at Love that Max posted about how one of her readers was challenging her to send her son to a regular overnight camp – vs. the special-needs sleepover camp she had planned. "I wouldn't nag if I didn't think you had it in you to challenge your own thinking and be open to a different path for Max," this reader wrote.

My own experience is that families whose children are not in regular classrooms or camps have made this decision not because they have an attitude-problem -- or are close-minded, as Ellen's reader suggests -- but because they simply can't find a regular class or camp that is resourced to support the complex needs of their child.

In other words, the town, city or country they live in is not as far enough along in investing in well-supported, inclusive environments.

Sometimes we families may choose inclusion anyway -- even when it comes at a cost.

For most of elementary school, Ben went to an alternative school for typical kids precisely because I wanted him included. On the plus side, he made some authentic friends and was relatively well accepted. On the negative side, although he had an EA, the school didn’t offer any special-ed or sign-language support, the building was an acoustic nightmare for a child with hearing loss, and he didn’t get the structured learning environment he needed.

I’m grateful he had that time in a typical environment, but I can’t say that the friendships he had there lasted. I’m sure some inclusion experts would say that’s because I didn’t try hard enough to maintain them – perhaps by setting up a formal friend circle or being more proactive in keeping in touch when he left the school.

We did make efforts, but because my son can’t pick up the phone to talk to someone, or easily e-mail, it was hard to keep in touch when we didn’t see each other through school.

What I believe was Ben’s best year of education happened in Grade 8, when he went to the Metro Toronto School for the Deaf. The contained program was part of a larger regular school, and in addition to the students in his class, Ben got to know some of the kids who took the bus with him.

The class was small and combined speech and sign language. The teacher had high expectations and knew how to teach kids with hearing loss or learning problems. The other students were mainly ‘regular’ kids who were deaf. The teacher promoted a very inclusionary environment where students looked out for each other.

Unfortunately, Ben aged out of that program after one year. In the Toronto board, students with complex needs are taught in contained classes at high school, not included in regular classes. We were given the option of a segregated school for students with mild intellectual disability – in a deaf/hard of hearing class – or a contained class in a regular high school for kids with developmental disability. The latter was in the basement, no windows, and most of the kids didn’t use sign language.

Ben spent three years at the separate school, and this year we decided to look at other options when we realized his program was almost entirely life skills.

I’m going to visit some MID classes in the Toronto board, and am also meeting with the Catholic board. But there are few options that meet his multiple and complicated needs – and none are based on inclusion in the regular class. I’ve been told the Catholic board doesn’t have an MID class that uses sign language, and that their deaf/hard of hearing classes are segregated. And I assume theirs are the same as the Toronto high school classes, where the students sign but don’t speak.

Ben needs to be in an environment with speech and sign, with primarily one-on-one teaching, and where he is physically safe: he has severe short stature, bone problems, is weak and can’t walk for any distance.

I will visit a number of programs and check out our home high school. But as much as I would like to have him in some way included with typical students, I have not seen a regular high school class that is resourced to support children with complex, multiple needs in Toronto.

Perhaps someone reading this will enlighten us – I’m happy to add another program to my list.

I know that from a legal perspective, I could show up with Ben on our home school's doorstep and demand they take him. But at what cost? Him having only one person -- maybe an EA -- who understands his sign language? Tiny Ben, with bones as fragile as an elderly person's, being knocked over by regular, strapping 17-year-olds? And at our home school they will not put him in a regular class anyway. He will be put in a contained class.

I believe that inclusion in all parts of society is where we need to go.

But sometimes, I find myself caught between a rock and a hard place in terms of what is available – at least in the school system – and what inclusion advocates say is “right.” Too often, as a parent, I feel judged.

Soft Oatmeal Cookies

We won't talk about how many of these I ate for lunch yesterday...

In a mixer, cream:

1 cup butter (I used Earth's best "butter")
1 cup white sugar
3/4 to 1 cup brown sugar

When fully creamed, add:

2 eggs, one at a time
1 teaspoon vanilla

In another bowl, mix together:

1 cup white flour (you could use whole wheat or half and half)
1 teaspoon baking soda
1 teaspoon salt AND/OR one tablespoon flax seed
1.5 - 2 teaspoons cinnamoon

Add this to the creamed mixture. When fully mixed, add

raisins (as much or as little as you want) and
3 cups oatmeal.

Bake at 375 for about ten minutes.

I found that these did not spread when baked, so I flatted then with a fork before baking. They were still thick, but easier to eat and very yummy!

Where did the week go?

We had a busy week. Saturday was our garage sale and it was a bust. After all that work, only five people showed up. The weather was horrible: cold and windy. Mom and Dad came over to help and we kept the kids out of the way. Adam and dog sat outside and sold stuff- we made some money but he said I made more selling some diapers to my AP group and some other things on-line than he did! We blew all the money we made on our belated anniversary dinner at Jack Stack.

Mom stayed on to help me with the kids one of the nights Adam was gone. She was able to attend Camille's preschool graduation and picnic.

Georgie thought it was pretty cool to be outside and run around with the big kids. I had packed sandwhiches for all of us, but he had lunch meat and avacado rolled up- more on his diet later.

Mom was able to see Joseph's baseball practice, at an old-school field in the middle of the woods, right near a train track. Georgie was in hog heaven to see baseball and trains, all in one go! Joseph's getting pretty good. I never thought I would say this, but I am so glad that my children like sports a nd are physically active. I could care less about anything other than swimming but I hope they are involved in one sport; I think Cami would like soccer and softball. (And not just because I think the pink cleats and bats and balls are adorable!)

Yesterday we had Joseph's end of the year picnic at school. It was a rainey and dreary day and I thought they wouldl cancel it- nope! We were in the cafe instead. I was a bit stressed, juggling all the kids alone since Mom had left. I'm sure we made a wonderful impression on the new principal- four grubby kids, one toddler gumming a cookie, another clutching a can of Sprite like a lovey and the soon to be kindy kid who didn't listen!

(Georgie has a thing for cans of drinks- soda or beer. He'll bring you a straw and want to share your drink. He has a down right FIT if Adam is drinking Diet Coke or a beer and won't share. Georgie gets soda as a treat but not diet and def. not beer!)

After bringing a meal to a friend with a baby in the NICU, I attempted to get all four kids to bed alone. I think Joseph and Camille were in bed and sleep by 9. Cole was down at 8:30, up at 9, and up again at 9:30. I finally nursed him to sleep and then attemped to get George asleep. I put pillows against the headboard of the bed and had the three of us sleep the "short way" on the bed for some more room. I last saw the clock at ten, so I was alseep by then- not sure when Georgie went to bed but it was around then. Adam woke me up when he got in and moved the kids. Of course, Cole woke up AGAIN to nurse but slept until 4:30, when Georgie crying "DADA!" woke us up.

Someday, I'll sleep, right?

Good thing they are cute!

I'm looking forward to the weekend... Gymboree and baseball games but otherwise relaxing.

Speak Georgie!

About a month or so ago, I was really feeling pretty discouraged about Georgie's speech progress. He seemed to be regressing and not making any progress. A friend pointed out that all kids go through a "regression" right before a huge leap in something (like cognitive skills, physical movement or whatever) and it is very noticeable in children with speech issues.

Right after she pointed it out Georgie, in hindsight, went through a huge growth in cognitive skills. His receptive language took off. He's begun showing an interest in the potty and actually wore underwear a few times and sat on the little potty. He took off his clothes (hummm, not a skill I look forward too!) and is riding his scooter well- better than his older brother did at three!

Tuesday he had a speech session and was fab-ta-bu-lous! He interacted with the SLP and said:

digger (his new obession. We had hail recently and so alot of people are getting things like rooves fixes- hence, lots of cool construction equipment in the area)
yuck (truck)
I did it

and pointed out:
eyes in the "gogglie eye" book
eyes on his teacher
various trucks in a book.

He was worn out by the end of the session and took a long nap! When he woke up, we went to get Joseph from school and he pointed out the digger in the street and was very excited about it. He wouldn't go near it, though. We did hear "itdigger!" from him. Later that night, Mom took him to Cami's TKD class with her and he said "more please" for more gummi snacks. Of course, she gave him more! Yay!

Today he came in from playing outside and grunted, pointing to his bare and wet feet. I said, "Oh, are they wet?" and he said "yeah."

Now, would most people understand him? Nope. I doubt many people could understand what he is saying without context clues, facial expressions or knowing Georgie well. But it's huge progress! Considering in January he was just beginning to make eye contact with people and jargon? HUGE!

In other speech news, Cole says "muh" which is "more." He says it all.the.time. He'll babble "muhmuhmuh" whenever we feed him, even if he has tons of food on his plate. At 13 months he can't/won't drink from a sippy cups and slobbers all over when I give him an open cup. I bought some soft straw cups at the Disney store and I hope those help. He likes to drink and I like to not have to hold a cup for him!

The downside of special



















A few weeks ago Sue Robins e-mailed me a copy of The Downside of Special: Parenting a Child with Special Needs.

'Stress, guilt and uncertainty are the norm for parents of children with developmental disabilities,' reads the deck. 'But instead of doling out pity and those can’t-you-control-your-kid? glares, one mom asks for your support and a little understanding.'

Sue, a recent chair of the Canadian Family Advisory Network, told me this piece in Canadian Family magazine (image above from its website) was generating a lot of conversation in the special-needs community in Edmonton.

"I don't agree with all of the sentiments in the article, but I like that it tackled this topic," Sue said. "What I thought was interesting was that it looked at how it's hard for me as a parent of a child who's different -- because that makes me different too! I feel different in public, and especially different at my son's school. And I find that hard. I haven't seen that written about before."

I was delighted to see a mainstream parenting magazine raising awareness of the needs of parents of children with disabilities! I thought the author nailed a number of the emotions and situations we experience, though her tone was a bit flippant in places.

Some of the comments that resonated with me:

Driving home, I watched my son in the rearview mirror, and he looked the same. Yet I saw him differently; his beauty had been violated, somehow, by Miss P.'s words. But my overriding feeling was one of shame. I hadn't heard concern in her voice,... only judgment: I'd produced a problem child.

There's also, for many parents, a  profound sense of loneliness. You feel you're out in the cold with your nose pressed up against the glass of normal experience, watching as your friends sail past, merrily oblivious, with their typically developing children.

...Family and friends may pull themselves away...A more subtle form of rejection occurs when people try to minimize your child's issues...When others deny your reality, it no longer feels safe to talk about it.

No one talks much about the anger, the embarrassment, the despair -- or the mind-blowing cost of treatment and the extreme difficulty of navigating the school system. All of this helps explain why parents so often feel as I did: cut off, with unacceptable emotions best kept to themselves and no clue what to do next.

Having fun and playing with your child often fall by the wayside because there's so much work to do and so little help.

Having a child with special needs radically changes the texture of motherhood...many moms become uber-researchers, activists and tireless networkers. "You go from mother to case manager," says Tess.

Love is there, fuelling your determination, but so is bloody-minded detachment, the same kind you see in personal trainers.

The strain all of this puts on a marriage can be extreme.

Once my son had a major meltdown, raging, screaming and crying as though he were being tortured, right outside the door of the kindergarten where several parents were already agitating for his expulsion...I felt a range of emotions, but the strongest was not empathy for my sweet, complicated little boy, who was clearly in profound distress. It was embarrassment...I wished at that moment not to be his mother, not to have to deal with this. This is another hard truth about having a child with special needs: The things that are most endearing and lovable about the child may be invisible to outsiders, while the things that are mortifying are all too visible.

Read the article and let us know what you think. And leave a comment -- there are no comments yet! I was disappointed that the author didn't use her real name -- and none of the people interviewed did either. I was surprised given the whole point of the story was to raise awareness and generate more understanding of our experience in the general public. How can we do that if we're not open about who we are?

Let us know your thoughts! Thanks, Louise

Dads and depression

The story below is from Disability Scoop, an excellent online resource for issues related to developmental disability. I think the mental-health impacts of raising children with disabilities are still a bit taboo. And I was just talking to one of our dad readers about how it's harder for dads to connect with each other -- for information and emotional support. Thoughts? Louise

Autism takes heavy toll on dads
By Michelle Diament, Disability Scoop

More than 30 percent of fathers of grown children with autism experience symptoms of depression so severe that they warrant clinical attention, first-of-its-kind research indicates.

In a study presented Friday at the International Meeting for Autism Research in San Diego, researchers found that fathers of adolescents and young adults with autism experience high levels of depression and are pessimistic about what the future holds for their son or daughter, much more so than dads whose kids have other disabilities like Down syndrome and fragile X.

“Fathers of adolescents and young adults with autism are really faring the worst,” says Sigan Hartley, a University of Wisconsin-Madison researcher who led the study, which was recently accepted for publication in the journal Family Relations.

Hartley said her findings mirror what researchers already know about mothers of those with autism — that they experience higher stress than other moms and that stress remains even as their children age. But this is the first time anyone has looked at how dads cope as their children get older.

For the study, Hartley and her colleagues looked at self-reported data collected between 2000 and 2005 from fathers of 240 individuals with autism, Down syndrome and fragile X syndrome ranging in age from 10 to their early 20s.

After controlling for the child’s age, family income and the marital status of the father, the research team found that dads of those with Down syndrome fared best out of the three disability groups while those with a child who had fragile X syndrome fell in the middle.

Factors such as the child’s behavior, the likelihood of having more than one child with a disability, the father’s age and the mother’s well-being did seem to play a role in fathers’ experiences. But Hartley says more research needs to be done to better understand what’s leading to elevated levels of depression symptoms in dads of those with autism in particular.

“This is the first step to drawing attention to dads,” Hartley says. “We need to get away from just looking at moms.”

A letter to Mrs. Zhuang





















Many of you read the news last week that Ran Zhuang of Boston was awarded a $7 million settlement because her daughter was born with a genetic disorder. Zhuang says she would have aborted the child, who is now 3, if she'd been offered prenatal testing. I asked Amy Julia Becker (above with daughter Penny, who has Down syndrome),  to respond, and she did, with the following letter to Mrs. Zhuang.

Let us know what you think! Louise

Dear Mrs. Zhuang:

A friend sent me the Boston Globe article about your recent lawsuit: “A superior court judge approved a $7 million settlement yesterday in a lawsuit brought by a Shrewsbury woman against four medical professionals at a Worcester hospital, whom she accused of failing to offer or explain tests that could have prompted her to have an abortion rather than carry her now-disabled child to term, her lawyer said yesterday.”

When I read it, I felt a tightness in my chest. I felt defensive of our daughter, who has disabilities caused by Down syndrome. I felt angry. And I felt sad. The only thing I wrote to my friend in response to the article was, “Ugh.”

I have two competing thoughts when I hear about your situation. One is that every human life is valuable and meaningful, no matter the form it takes, no matter the genetic problems involved, no matter the degree of disability. The other is that I should feel empathy and even love towards you, that I should try to understand. I guess the second point is really the same as the first. Just as I believe your daughter has intrinsic value, so too do I believe that you are a person who deserves my respect, my compassion.

Maybe you were frightened by the conversations we have had recently in this country about health care. Maybe you thought this lawsuit was the only way to ensure that you would be able to care for Annie in years to come. I imagine you are very sad about some aspect of your daughter’s life. I don’t know if she is experiencing pain and you desperately want that pain to go away. I don’t know whether she can walk or talk or smile. I don’t know if she keeps you up at night. I don’t know if she calls you Mama. I don’t know if you feel worn down by the care she needs. I don’t know. But I have to imagine that some of those things are true and as you look ahead to decades together, you not only feel frightened and overwhelmed by what those years will require of you, but angry and saddened by what those years may require of your daughter. I have to imagine that you love her, as only a mother can.

And yet.

A spokesman for the hospital said, “Events of this nature impact patients, their families, and the providers of care, and we strive to learn from them." Your decision to sue sends ripples that reach beyond your personal situation. Doctors and nurses and genetic counselors, fearful, might be more inclined to push for prenatal genetic testing and even abortion of fetuses. Your story may incline individuals who read about the case to think that children with disabilities aren’t wanted by their parents, that children with disabilities are a categorical burden on society, and that genetic testing offers control over the outcome of individual lives. Your individual decision to sue has consequences for the entire community.

Of course, the impact goes both ways. A child with a disability requires a community of care. I can only imagine your situation based upon what I read in the paper, but I wonder if you feel isolated. I know you are from China and English is not your first language. I wish I could say that everyone in America wants to offer support and inclusion to children and adults with disabilities. Unfortunately, it’s not true. But there are many people in this country who care deeply about families like yours. There are many who would love to get to know Annie. And so I wonder whether those of us who, like you, have children with disabilities, might be able to welcome you into our community, whether we might be able to offer support in the hard times, whether we might be able to share your joys and offer some comfort in your sorrows.

Amy Julia Becker blogs at Thin Places, where she writes about faith, family and disability.

A weekend escape

















Joanne Barker wrote to me about a Moms' Camp run by Easter Seals in London, Ontario. "I'm a mom of a special needs child and I can say honestly that the Moms' Get Away Weekend is the one real break I get every year. It really is a chance to connect with other moms that have 'been there.' We let loose a little, get the much need rest we've been missing and build friendships that last."

It sounds like this model would also work well for dads!

Here are a few more details from Joanne:

As a mom, you know that there's never enough time in a day to get all the things done that need doing. As the mom of a child with special needs, that sense of pinching time is only heightened. Between medications, appointments and life, your day may start at dawn and end well after midnight. A break never comes -- not that you regret it cause you love your kids -- but burning out always hovers in the offing.

Moms' Camp is exactly what it sounds like -- a quick getaway for Mom. It starts on a Friday evening and for two glorious days moms who spend 24/7 caring for a child with special needs get a chance to not cook, not plan, not worry and not clean.

Moms' Camp is a-once-a-year chance to enjoy a weekend of rest, relaxation, idea sharing, networking and life experiences with other Easter Seals moms. There are organized activities or you can just sit by the pool, read a book or rest. There's no obligation to participate in activities.

What you're going to find at Moms' Camp is friendships you weren't expecting, people who understand what you're going through, a sizeable support network, and that much needed rest that allows you to be the very best.

This year's camp runs June 10-12 at Woodeden Easter Seals Camp in London. Space is limited to 70 moms and the cost is $70. While the camp is primarily for moms whose children are registered with Easter Seals, all mothers are encouraged to apply.

For more information, click on this registration form or e-mail Joanne at jbarker@trebnet.com.

She shoots, she scores!



































I received this moving story from David and Carol Fisher who run a hockey team in Peterborough, Ont. for players with physical, emotional or neurodevelopmental challenges. David and Carol have two adopted sons with disabilities and their eldest daughter, who has cerebral palsy, attended Holland Bloorview's nursery school years ago.

Check out a very special moment in hockey history, described below by the Fishers and coach Dale Lowe, on this Youtube video.

We are called the Kawartha Komets Special Needs Hockey program. We now have 35 players on two teams aged six to 41 years of age. We are part of an organization in Canada called Special Hockey International and we just returned home from a tournament in Boston. This event was attended by over 1,000 hockey players who were part of 68 teams from across Canada and the U.S.

As the undefeated Junior Komets entered their final game against the Steel City Icebergs of Pittsburgh, it was clear that our team was faster and more skilled than its opponents. Realizing this, our juniors quickly adapted their game, showing a tremendous amount of empathy for the Icebergs. Then, the most incredible, spontaneous act of sportsmanship happened in front of the Steel City net.

Brandon of the Kawartha Komets gave the puck to 6-year-old Nicole Mullins of the Icebergs. As you will see in the video, Nicole uses a custom-made walker created by her father, fully equipped with her hockey stick. Nicole was born with hip dysplasia. She has two dislocated hips, two short-bent femurs, and two club feet. But, special needs hockey has allowed her to be part of a team and achieve her goals.

After Brandon put the puck on Nicole's stick, the entire Komet line skated the length of the ice beside her, and watched her score a goal -- as fans from both sides cheered wildly. Afterwards, there were tears running down the cheeks of many of us who had witnessed this unprompted, unscripted act of sportsmanship. We have never been so proud to be part of a sports program.

Brandon, the young man who passed the puck to the little girl, has lived in group homes since age five and was always told he could never play hockey. He has a developmental delay and is a natural on the ice. He has never played hockey before and is incredibly intuitive and versatile.

We wanted to share this story with you to encourage parents of children with disablities. Some time ago you had an article on the BLOOM blog about a father who had a little boy who suffered a stroke in utero. The father expressed concern about the challenges his little guy would face in life with one side of his body paralyzed. Our junior goalie also has hemiplegia and plays goal without a goalie stick. He is very good because his father and his brothers, who are very athletic, have been taking shots on him since he was a toddler. He is the goalie in the video and his name is Colin. I would love for that father to see that video because I feel it would be very encouraging for him to see that sometimes children learn how to compensate for the challenges in life that they face.

Another Short Update...But With Pictures!

 I know I have not updated in a  few days, but we have been busy!

Nina continues to receive Physical Therapy and Occupational Therapy at Mayo Clinic every day. She continues to do well and she was able to sit like a pretzel on her own today (she got herself  that way!)It has been challenging for our family to have one of us there with Nina, while the other one stays at home with the other 2 girls. The girls are feeling it too, and they are more sensitive and more rascally than usual.

This last weekend we went to Andy's grandfather's 90th Birthday celebration. It was wonderful to see family! Andy also got to spend Mother's day with his mom. On the way back, we stopped by my mom's house to have dinner and I got to see her. It was nice that we both got to see our mom's on that special day.

And, for your viewing pleasure, here are some pictures from Sunday of the girls.



So what are we up to now? Andy is with Nina and I am home trying to pack our house! We are moving in 2 weeks! It is a crazy and overwhelming thing to do.

Lastly, we have yet to sell our house, so prayers in that area would be greatly appreciated!

And that is it for now. I will continue to update as much as I can.

Repetitive strain















I've been diagnosed with repetitive strain in my hands and wrists, so I'm hoping to get speech-recognition software!

When I thought about the diagnosis -- repetitive strain -- I couldn't help thinking that the words 'felt' a lot like the experience of raising a child with disabilities. And the strain doesn't come just from the child's challenges, but from attitudes and physical barriers and cultural expectations about what matters.

I read two moving posts by parents this morning that I want to share.

A meandering rant about how more is less and less is more spoke to me. Jennifer Johannesen writes:

We like our disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! Don’t get me wrong – where we were 50 years ago is unthinkable. But why is it that families with disabled kids, and the kids themselves, are encouraged and rewarded for working harder than everyone else around them? The tasks are one thing – compound them with expectations, grief, lack of sleep, managing schedules, integrating team members, medical emergencies…

I drank the kool-aid for many years before finally, happily, giving it all up. Contrived, monitored, critiqued exercises gave way to joyful, authentic, meaningful experiences. Are you wondering, Is she really saying this? How could she not want these things for her son?!

Trust me, it’s not that I didn’t. I just decided that the cost was too high. For both of us.

And Elizabeth Aquino had this to say on Mother's Day: Tonglen

When I am near to despair over Sophie's seizures I practise tonglen by breathing in the sufferings of all the mothers I know who have children that seize and all the mothers I don't know who have children that seize. And then I breathe out. I breathe out love and compassion and health and happiness for all those mothers and all those children. I believe that embracing suffering, meeting it, accepting it and even embracing it might lead to understanding it, and that understanding connects me, deeply, to others.

Some other interesting links:

Life and the Cosmos, Word by Painstaking Word

A New York Times interview with Stephen Hawking:

"My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with," he says. "Don’t be disabled in spirit, as well as physically.

'Holy Nonsense:' Autistic artist's work intrigues (see image above).

Hope builds for treating intellectual disabilities

Condo blocks mom from installing wheelchair lift for disabled daughter

600,000 adults could have autism that has gone undiagnosed

New Disability History Museum website

BLOOM one of best non-profit blogs
















BLOOM is named one of the nine top non-profit blogs by Mark W. Schaefer, a well known blogger at {grow}, social media educator at Rutgers University and author of The Tao of Twitter.

Mark partnered with  Helen Brown, whose company teaches non-profits how to raise funds, to "examine more than 250 blogs from some of the largest and most important charities anywhere. We looked for the blogs that were engaging an audience, offering superb content, and aligning with the organization’s strategies."

This is what Mark says about BLOOMThis blog brought tears to my eyes. If you’re a parent, it will probably have the same affect on you. Bloom is about parenting special needs kids. It isn’t fancy. In fact it’s just on Blogger. But what it lacks in sophistication it more than makes up in courage and heart. Writer Louise Kinross has something unique and personal going on here. She has nurtured an active, loyal community and with good reason … this is blogging at its best.

I am honoured that we are recognized here and thank you -- dear readers and writers -- for enabling us to grow a worldwide community of families and professionals who share the joys and challenges of parenting children with disabilities, talk frankly about difficult subjects and celebrate our children!

I hope this is a place where you feel heard and understood. Louise

Happy Mother's Day!

For FIVE YEARS, Adam blew Mother's Day. The first year was fine- we went to Tippins and I felt like a rock star with Joseph in the sling. It was perfect.

For a few years after that, there was "no money" or Adam was laid up from surgery. (To this day, I don't know what he didn't get me a card BEFORE his surgery but alas...) Last year, he was better- we got family pictures taken and then went to Applebees.

This year, the man has LEARNED. I got a gift card to a coffee shop just as my Starbucks card ran out. He bought me a facial Groupon, which I new about, and TWO massage Groupons! You go honey! We even went out to dinner last night and used another Groupon for ice cream.

Thursday, I heard that the "Diana, A Celebration" exhibit was offering free tickets to kids under 12 with a paid adult. SCORE. The kids' tickets are 15 dollars and adults are 25... no way could I afford that! But if Camille got in free, and Adam could watch the boys and it was Mother's Day? Yes, please!

We all went down to Union Station and I asked if kids were free. The clerk said yes, so I happily pulled out my credit card. I was surprised at how excited I was. I remember Diana passing away (found out on the Internet, odd for that time period!) a nd watching the funeral. I think the Royal Family is neat but I am hardly a Royal Watchers. However, it's kinda a once in a lifetime thing and I was going to get to see it with my Princess!

Then she said, "We have a 2:30 availiable next." I said, "Okay but I can use the ticket any time today, right?"

"No, you have to be at the gates around 2 ot 2:30 to get in."

"But I checked the web site and it said that even thought the tickets are time stamped for a time, you can use them anytime during the day."

"The web site is incorrect and we are working on fixing that," she went on. I said, "Well, then," and put my card away and walked away.

Camille was upset- she woke up that morning asking to go see the princess dress. I took a photo of her in front of one of the Diana posters but I was ready to cry. How many times is Diana's wedding dress and other memoribilia going to be in my city- and at the same time as the wedding of her son? I groused that the web site was wrong even though the exhibit has been up since March. Adam pointed out that that is why Union Station is having so many budget issues- and in this day and age, you need a current, up to date web site to feed people information.

We ended up getting NY style pizza (yum!) and wandering around some shopping areas. It certainly wasn't a complete bust but I was really looking forward to that event. I love historical houses, musems and showcases but wouldn't normally spend 25 dollars on myself to see a wedding dress and other items. It was a special treat and I am bummed it didn't happen. :(

When we got home, we relaxed and Adam mowed the yard before making dinner. My stomach is bothering me and I hurt my arm but other than that it has been a lovely day!

Happy Mother's Day!

Ben took this shot of D'Arcy and I at Cherry Beach! The other kids refused to get out of the car (there was an infestation of bugs). Happy M's Day! Louise

















And I thought April was busy!

Come April 1, Adam and I normally have to brace the house and hold on tight for the storm that is about to hit. Two birthdays and our anniversary, plus Easter, leave us in sugar shock and gasping for air. This month, we literally had one event a week.

Sadly, May doesn't look much calmer!

My mom was/is going to come visit to help me out. I e-mailed her our May calendar of events and we have something going on multiple times a week. If it isn't Gymboree (for Georgie- starts today), it's baseball, TKD or end of the school year activities. Camille has a school picnic, and Joseph has one a few days later. CCD and baseball overlap but, thankfully, that ends today.

To top it off, I have NO clothes. Okay, I'm exagerating but my body shape has changed and none of the clothes I did have look flattering on me anymore. I can fit into some of my smaller capris but the cut around my waist doesn't work. I bought some tunics and leggings at Target and I really like them. Adam was laughing at me but when I walked into a MNO, two other friends were wearing the same style!

Camille, however, thinks that I need to wear "pajama jeans." She says they will give me a "tight tushie" and then slapped my butt. I have NO IDEA where that came from and I think she is talking about "jeggings" those jean leggings! Cami, sweet pea, what are you learning at preschool?

Considerations For Educators of Students With ACC



“Considerations For Educators of Students With ACC”:

Mr. McCallum wrote this document. He is a teacher
who taught a child with Agenesis of the Corpus
Callosum in his classroom. He offers detailed and
valuable information.

If you would like to receive a copy of
“Considerations For Educators of Students With ACC”
sent to your e-mail please send me an E-Mail request.

In your e-mail it is helpful to know if you are
a parent or a teacher requesting the information.

Quick Takes Friday: Mother's Day Edition

(Pop over to Jen at Conversiion Diary for more Quick Takes!)

1.
I won't miss having to clean up the flood in the bathroom after giving the toddlers a bath but I will miss the smell of a freshly bathed baby


2.
I won't miss "poop days" where both kids poop in every single diaper but I will miss the feel of a smooth, giant cloth diapered boo-tay.

3.
I won't miss having to plan my days around naps but I will miss the naps!

4.
I really, really, really won't miss the cheerio, graham cracker and toast crumbs on the floor but I will miss snacking with my babes.
5.
I won't miss having to wrestle my camera from my kids but,  boy, will I miss the self portraits!
6.
I won't miss the giant, leaking boobs, the boring nursing bras or the sore nipples... but I will miss breastfeeding. I packed up all my bottles and pumping supplies for the garage sale and didn't feel sad. I worked hard to nurse Cole and I'm glad I did!
7.
I won't miss the insane hours between 4 and 6 pm, the crazy mornings with someone crying outside the bathroom door as I shower, stepping on Lego or peek a blocks, sliding on Matchbox cars or fishing a Barbie shoe out of my tushie. I won't miss playing "guess the brown substance" on my pants/the carpet/my kid's finger. But I know I will miss having these munchkins underfoot.

Happy Mother's Day!


'I'm not no one, I'm his mom'

I think the most engaging presentation at the patient- and family-centred care conference in St. Louis was by Jim Conway, a lecturer at the Harvard School of Public Health.

Jim has held senior positions at the Institute for Healthcare Improvement, the Dana-Farber Cancer Institute and Children's Hospital Boston.

Jim talked about an experience in the 1970s that woke him up to the essential role of parents in the care of hospitalized children.

He was an administrator in radiology at Children's Hospital Boston and explained to a mom that she couldn't accompany her child into the x-ray room. "I don't care who you are, I'm staying with my kid," she said. When he pointed out the sign that said "no-one" was allowed through the door, the mom said: "I'm not no one. I'm his mom."

During his 27 years at Children's Hospital he learned that if there was a discrepancy between a child's hospital health record and the mother's account, they were to go with what the mother said, because "we were only taking care of a piece of that child and she was taking care of the whole child."

Since that time, hospitals that are committed to partnering with families have stopped viewing parents as 'visitors' and allow 24/7 access.

Jim said family-centred care occurs when patients and families are treated as partners in care at every level: from their participation on key hospital decision-making bodies to their input at the bedside. "Patient- and family-centred care isn't an advisory council," he said. "That's just one piece."

Leaders play a critical role, he said, communicating in words and actions that the patient's safety and wellbeing guides all decision-making. The entire system is organized around the choices and needs of patients and families.

Jim shared research that shows that patient- and family-centred care reduces length of stay; lowers cost per case; reduces adverse events; improves employee retention; reduces operating costs; decreases malpractice claims; and increases market share.

A recent study in the International Journal of Health Care Quality showed that hospitalized patients who participated in their care cut adverse events in half: "Among the 788 patients with both patient survey and medical chart review data, there was an inverse relationship between participation and adverse events."

Some leading patient- and family-centred care practices include having patients and family members on boards, starting board and hospital meetings with family stories, and including patients and families in bedside rounds. "Nothing builds will more than meeting your patients," Jim said.

Patient- and family-advisory councils are now mandatory in Massachusets hospitals and 93 per cent of health leaders surveyed in 2010 said the patient experience was one of five top priorities (35 per cent said it was the top priority).

Jim concluded by saying that patients and families are the only people who know the ins and outs of your hospital and that if healthcare is on the table, patients and families have to be there too.

He shared a quote about the evolution of patient- and family-centred care from advocate Martha Hayward:

Do it to me.
Do it for me.
Do it with me.

The conference was run by the Institute for Patient- and Family-Centred Care. They have excellent materials on their website.