Many Gifts Monday

13. dense fog- the fog rolled in Sunday and it reminded me of the fog that rolled over the hills when we lived in New York. I would try and chase the fog, hoping to find myself incased in it. Fog also makes me thankful for...

14. blue skies- because as neat and romantic as fog is, it makes me long for the blue skies.

15. Baby teeth cutting through and releasing my baby from teething pain... for now!

16. wild toddler hair

17. MOPS Mondays and my table of friends.

18. MOPS childcare and the chance to sit alone without my soon-to-be toddler climbing on me, yet...

19. The joy that comes with feeling weird and unnatural WITHOUT a baby snuggled in my lap. It means I've been blessed with many snuggly children over the years and am used to having a baby cuddled with me.

20. Target sales on shoes and the hope that I can score some much needed shoes for the summer at a decent price!

21. The process of cleaning out the closets and basement, throwing away items and donating them. It's soooo freeing to get rid of items we don't need or use! Ii can make way for things we REALLY need or find freedom in having less STUFF.

A Mac and a grizzly

This was the winter wonderland yesterday, but now everything’s melted.

I have two stories for you today. Last Thursday I brought Ben for his weekly physio session. Ben complains bitterly but he is always in a chipper mood afterwards. As we walked down the hall to the 2nd floor rehab gym, there lying on the floor was a two-inch grizzly bear character. Ben was delighted with this find, but I told him we would put it on the bench in case someone lost it and was coming back to look for it.

Imagine my surprise when I got on the elevator on the 5th floor this morning and the same Grizzly was now sitting on the handrail inside. Ben loves to send his characters out into the world in different ways, and it seemed this Grizzly had had a bit of an adventure since last week.

Remember my post about my urge to buy the new iMac computer so that we could put the Proloquo2Go communication software on our iPad? We couldn’t modify it with our old Mac computer.

Well, we got the computer on Saturday. “You know why I have to do this, right?” I said to D’Arcy. “Yes, I know why you have to do it, even though I think you’re pulling at straws,” he said.

The keyboard is so tiny on the iPod that it’s challenging to use and I’m hoping the larger keyboard on the iPad will be easier. I think the picture symbols will be easier to see and with the latest technology, I should have a leg up in trying to customize it with our own photos. Ben's psychologist also recommended the iPad.

So we walked through the Eaton’s Centre carrying our big Mac box and then yesterday D’Arcy spent four hours on a support line with Apple because for some reason we couldn’t download the Proloquo app without losing the existing apps on our iPad. In fact, what I wanted to do was transfer the most recent backup from the iPod to the iPad but it at first proved impossible. You know how everything about a Mac is supposed to be intuitive and simple? Not so much for us!

In order to get Proloquo2Go on the iPad, we had to wipe our other apps, including the great Sign 4 Me app. After hours of instructions and comments like “That’s odd” from the support person, D’Arcy was rendered incapable of speaking -- about iPods or iPads or iMacs.

“I simply don’t know,” was the only way he answered questions last night.

I was later able to restore a backup from the iPod onto the iPad – minus the photo libraries. While restoring it, it said it could transfer some items and not all.

So now I have a ton of work to do to simplify the vocab and get real photos in there.

And Emma from Greece was correct that there is a way to 'turn off' the ability to delete the Proloquo2Go app, but we haven’t figured it out yet.

I have to thank Pam, a support person from AssistiveWare, who is trying to help us. Pam is the parent of a young adult with disabilities and I'm hoping will write us a guest blog.

Cerebral Palsy Awareness Month

Are you ready to learn with me? March is Cerebral Palsy Awareness month, and it just so happens that right now I am "hungry" to learn about all I can about this condition that is part of who my daughter is. Nina came to us with many challenges, and in order to overcome those that come from her Cerebral Palsy, I am trying to learn all that I can.

So, in the next few months stay tuned as I share about choosing to adopt a child with Cerebral Palsy, living with Cerebral Palsy (from the mom's perspective) and I might even have some new friends share a little of their story right here!

And finally, just like I have invited people to ask any questions they have about Down syndrome and Nichole during Down syndrome awareness month, I am inviting you to ask any questions you have about Nina or Cerebral Palsy. If I don't know, I will find out!

Education and intellectual disability

It's interesting to see how divergent approaches are to teaching students with intellectual disability.

Here in Toronto, we've found the emphasis is on life skills -- even if the child is perfectly capable of doing academic work at their own level.

I'm told that most high school students with intellectual disabilities don't get high-school diplomas. I'm not sure if that's because they're directed into non-credit life-skills programs in Grade 9, before they're given a chance.

One of the students who did beat the odds is Ashif Jaffer. But the Toronto student with Down syndrome is now in danger of losing his first semester at York University. The university won't allow a teaching assistant to attend exams with him -- an accommodation he had at high school. See School denies access: student.

Meanwhile, U.S. dollars are being invested in college programs specifically for students with intellectual disabilities: College uses federal grant to encourage students with intellectual disabilities to attend college.

I hate dental work

I should come up with a catchy title but I can't think of one. I just really, really hate dental work.

I LOVE my dentist. I joke that the Herd and the Extended Herd (various in-laws) fund his vacation home as we all see him! He's very nice, really sweet and enjoys the children.He told me once that he likes seeing big families and thinks they are a joy to be around. He just scored life-long commitments from us for that!

I do think his office staff breathes a sigh of relief when we leave, though!

Anyway, I've had some major dental work done. I had fillings as a very young child- under ten years old. When I was a teenager, I had six teeth removed, several years of braces and major jaw surgery. Not too much later, I had some crowns put on. I guess crowns are only good for a finite amount of time because I needed mine replaced.

I arrive a week ago, sans kids, and the hygentists all smiled at me and told me how great it was that I had a morning free without kids. Um, I love them but having crowns removed was not my idea of quality alone time.

The dentist greeted me with a big smile and told me that it wouldn't hurt. I called him a liar and I wasn't joking. He assured me that he believes in pain-free crown removals and I said, "Yeah, I've had four kids without pain medication but I am NOT interested in feeling this!"

"Wow," he said. "I could never do that!"

"That's why you are a man and a dentist and I am a woman and I think teeth are squiky and yucky."

He laughed and asked me about my previous crown placments. I told him that when the former dentist did the shot of novacaine, they hit one of the screws in my jaw. Instead of taking out the needle, they simply twisted it to inject the medicine in another area. Ow. Very much ow.

Oh, and he was later convicted of a crime. Class act, that.

My dentist numbed my gums and then did the first two injections. A few minutes later, he did two more and I was nice and numb... on the top. When he went to do the lower removal, I could feel "cold." I told him and they injected me... two more times.

After those six total shots of novacaine, I was nice and numb from my eye sockets to my ear! I zoned out to my Hypnobabies and they finished up their work. When they placed the final temp crowns, I had two more shots- for a grand total of EIGHT shots of novacaine. I was lucky to feel my head attached to my neck when all was said and done!

Everything was fine, save some major sensitivity, until tonight. I took a second piece of chocolate and lost a crown. It is senstive to cold AIR now (greeeeeat) and I'm not sure how I am going to eat with the stupid thing off. I called the after hours dental line but I'm not sure if they have Saturday hours.

Serves me right for being a pig and eating candy. :/

I hate dental work.

I hate my stupid crowns.

A photo of your family

All of us at Cole's baptism. We clean up well!

Easter shopping

I'm ahead of the game this year!

Joseph had a party at a local mall, so I took Cole with me and went shopping while Joe played. I found a new birthday/Easter outfit for him and an new Easter/spring dress for Camille. I found some cute clothes for my sister's new baby on sale. I wish she knew if she was having a boy or girl so I could buy gender specific clothes but these were Halloween/Christmas and pretty cute. I guess I will have to go back when we know!

We got home at bedtime and Georgie was wiiiiide awake. I tried to nurse Cole to sleep but he kept looking at Georgie and playing. Adam broke out the magic mini van and they will hopefully be asleep when he gets home. We were supposed to have a date night but were foiled by the babies- again!

That Old, Beat Up, Chewed On Cross

Day 13

I've been thinking about you alot lately. I don't know why. Perhaps it is because you would, if memory serves me correctly, would be 100 this year. Perhaps it is because Camille, your namesake, is the same age I was when you died. I don't know why- but I've been thinking about you. Did your nose tickle? Can your nose tickle in heaven?

I miss you. It's stupid, since you died over 25 years ago. I don't remember what your voice sounded like, but I do remember things you sang to me, like "Pop goes the weasel" and the song "Playmate." I have a little music box that plays that song. Camille and Georgie had it on yesterday and were playing with it. Did you put them up to that, to let me know that you think of me too?

(Do people in heaven think of those of us on earth?)

Sometimes I wish you hadn't died, that you had lived but, yet, that everyone would turn out the same. Mom and Dad once said that if you had been alive, we wouldn't have moved to Korea and, well, then I wouldn't have met Adam. I do believe everything happens for a reason . . . but I wish you had been alive AND moved to Korea with us, so we could have had you longer AND I would have still met my husband.

I wonder what you would have thought about my children. Joseph is your first great-grandson. I can almost see it, you holding my tiny baby boy. And Camille. Would you have smiled when I told you her middle name or rolled your eyes? When she grew up, would you have delighted in her antics, or laughed and told me it was PAYBACK? Or both?

Oh, and my babies. I know you were there the moment Georgie was born and I know you watched and waited with him when he was in the hospital. I felt you there, in the corner of his room, watching him and praying for him in the way that only a great-grandmother can. You told him to hang on and be strong, because we love him so much.

I know you like Cole's middle name, because it is the same name you chose for your son. I think you would have held me up during that long, difficult pregnacy and those dark months. Scratch that- I know you did, because you prayed for us, didn't you? You wouldn't let anything happen to my sweet little bear.

Sometimes, when I close my eyes and dream hard enough, I can see how it might have turned out. I can see you at my wedding, watching me wear your wedding dress and telling me how you and your sister went shopping for it. I can see my mother bringing you to visit me after the birth of my children and handing you your new great grandchild. I can see you at my sister's wedding, in a four generation picture with you, your daughters, granddaughters and GREAT granddaughters.

Can I see it because you were there, in spirit, watching us?

When I miss you most- and it seems like that is often these days- I wear your cross that Mom gave me. It is gold and lovely, even with those dents- the teeth marks left by your children. Cole likes to pull on it and put it in his mouth. It makes Adam nervous (what if he chokes?) but I don't mind. I like to picture you cuddling your children as they play with it, finally quiet for a moment. I like to think that Cole is leaving his marks on it for future generations.

(Will a granddaughter of mine wear it one day and remember me?)

It's that old beat up, chewed on cross that connects me to you these days. My memories are fading but the feelings are- unconditional love and security. And it's the security and unconditional love of the Cross that reminds me that you still here, with me, loving my family, praying for my kids.

I miss you, Grandma.

The transition learning curve

I mentioned a New York Times essay by Susan Senator (photo left) in this blog about youth who won't live conventional adult lives. Susan is the author of Making Peace with Autism and The Autism Mom's Survival Guide. Susan left a comment on my blog yesterday and I asked if she could share a bit about her son Nat's move into adulthood (photo right before his prom). As the parent of a child who won't have the conventional job or college schooling, I was struck by a comment Susan made on a Linkedin group at Hopeful Parents: "I'm Susan Senator, parent to Nat, 21, dx severe autism. He has a bright future ahead of him and I am going to make darned sure that continues!" A bright future?! This was something I had to investigate. Susan suggested I post a recent piece of hers about searching for a Day Program. Thanks Susan!

The transition learning curve
By Susan Senator

I’ve begun Part II of Nat’s Transition to Adulthood: the Day Program. November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up. He will leave school that day and move out of his school residence soon after. This is a lot to contend with emotionally and pragmatically, for Nat and for my family. That’s why I’m writing these blog posts: to tell all of you out there to get going as early as possible in your research and in your emotional process. You look at your little guy now and think, “Oh, God, I can’t imagine him grown up. What will that be like? What will his peers be like? Will they be like a bunch of lost souls shuffling around from van to mall everyday?”

I will get to that. The only lost souls are those who are not feeling happy and purposeful in their lives. That includes you. I hope you are not a lost soul. But more about that later. I suggest you approach this the way your autistic child approaches learning any new skill: break it down into baby steps. Think about your modus operandi, how you operate, how you achieve things, and go with your own model. Maybe you like to do things methodically, one appointment after another. Maybe you do things in bursts, like me: one appointment or maybe ten, and then none for months. Whatever works.

First you have to learn about who you are dealing with. I would try to understand the key players, the names of the departments and organizations involved. How do you learn this? You go to a workshop. Pick one workshop for this year, one Transition to Adulthood workshop. Write down your questions. Ask a few of them, but not all. Keep in mind that as you dip back into this stuff, it will clear up, concept-by-concept. There are Federal Programs and there are State Programs. Federal are for everyone, State differ. Who is your State point person? Cultivate a relationship with a friendly introduction via email or phone.

Next you learn about the programs themselves, what they offer. SSI, SSDI, Section 8, Developmental Services, DayHab, Residential Supports. Don’t worry yet about how to get into them. Just learn their function. I tried to figure out all of Section 8 in one fell swoop: forget that. These days I’ve been touring centers in the Greater Boston area that offer a program M-F, 9-3. These are typically Medicaid-funded (Federal $) therapeutic programs, i.e., no employment/earning component. These are called “DayHabs.” The centers vary in quality and goals; some do highly individualized curricula and others have more of a general schedule with a choice or two. They go out into the community (it should be much more than malls, and if it is malls, then be sure your guy is learning money skills and dealing-with-the-public skills). Visit the program. Tour it and get a good feel for it and the clients it serves. Are they engaged? Happy? Watching TV? Can you imagine your guy there?

Imagine your guy there: he is part you, part the child he is now. So you think about how you would feel there, but not using your deep and complex social knowledge. Think about what he likes to do, and if you can’t name a concrete activity, (mostly Nat likes to be active, with people but not talking to them), figure out when he is happiest. Does this place match that?

(Be prepared for developmentally disabled adults. They are not as good-looking as kids with DDs. Think about it this way: no adult is as beautiful as a child. We age and uglify. Sorry. But don’t look at these people as lost souls, broken, pitiful, sad. An unusual face is just that: an arrangement of features that you don’t see everyday. It means nothing. A voice that speaks in grunts or not at all is still fully human, FULLY human, with an inner life, even if that inner life is pictures swirling around his mind, or beautiful sounds. I don’t freakin’ know! I’m just saying, get past what they look like. It’s just a body. We can’t all be magazine people.)

Many of these centers (also known as Vendors, or Service Providers) also have Day Programs, which are not DayHab, or therapeutic only. Day Programs often have a volunteer or employment option, but you need to find a way to pay for it.

Next you find out how to pay for it. You need to find out if a program is an entitlement, or Medicaid/Federal money, or if it is something you have to push for with your Developmental Services point person (see above). You need to find out how to set up your savings so that they can help your adult child someday but not get in the way of his funding. I still don’t really understand this one, but I have a lawyer who does. You are looking to set up a Special Needs Trust.

About guilt: try not to go there. Even if you have resources to support your child, you don’t want to get into a situation of depending solely on that, especially when you are gone. You have to think of your adult child as an independent adult — that is his right, it is about his dignity. These programs help him become an independent adult, as much as possible. We are so lucky that our society attempts to support those who cannot do it all on their own. We are a society that spends tons on building roads and highways and bridges. We are a society that subsidizes farmers and to some degree, big corporations with tax breaks. Everyone gets help and benefits from our government to some degree. Why shouldn’t your guy? Why is one considered a handout and having our roads built for us considered a given? Think about it. I wish we could all chip in and get along.

I have listed for you the big steps. You break them down. Do one thing at a time. Start a notebook. Save business cards and telephone numbers. Build your network.

Above all, give yourself a break, take your time, but still: do it.

Day 11 and 12

Sorry, no photos that I know of!

How I found out about blogger and why I started one:
I switched from BabiesOnline because it was free and had a better format. At the time, Joseph was 21 months old and Camille was a newborn. I had the only grandchildren and great-grandchildren (of all the living grandparents) and I wanted a way to keep extended family updated on the children without sending out tons of e-mails. People could read at their own pace on their own time.

Want to read something fun? Here is the first month of blogging!

Now I blog to keep the family updated on the kids and speak openly about the NICU, PTSD and for NPN. I enjoy having an outlet to write, at my own pace, about things I love. And, like most bloggers, I hope this will serve as a lovely, live record of our lives when our children were small and our family was still growing.

The game of Scrabble

Something miraculous happened last night.

My son Ben, 16, played a game of Scrabble with me. This was miraculous because Ben has a terrible time focusing, which makes game-playing challenging.

But this time Ben was interested. He even enjoyed moving his letter tiles around to look at word possibilities.

He came up with “ARM.” Then he came up with “ALY” – the name of his cousin, though she uses an “I.” I was ecstatic. Later he produced “ICON.” I don’t know if that was just a lucky guess because he couldn’t speak to explain it.

I had to keep score because Ben can’t add.

We had a lovely time, but I couldn’t help thinking that he would never be able to play at one of our family gatherings, with his cousins.

Just the day before, we celebrated my birthday at my mom’s house. Scrabble is a competitive game in my sister-in-law’s family. Ben’s cousins are brilliant students – one in second-year university already holds a prestigious research grant. My SIL rarely lays Scrabble tiles down without forming double words and knows all the obscure ones most people have to look up in the Scrabble dictionary. My other children joined in the game and it moved swiftly around the table, with words like ‘FEDORAS” and “FOLLOWED” filling the board.

Ben sat off on his own in a chair, reading an old picture book that had something to do with acorns and adventures and making the odd sounds he produces because he can’t speak. He couldn’t participate because of the fast pace and complex language.

And somehow I couldn’t help thinking that this Scrabble game represented the value our family had always placed on education and academic learning. And it made me think how I, too, in the past had revered intelligence and somehow felt it was an ability a person earned through hard work. To me it seemed to be a higher or more refined quality, let’s say, than physical beauty or athleticism. In fact, I once had an argument with a university friend who said if she had to choose between beauty and brains, given our culture, she’d choose beauty. To me that showed a certain superficiality and materialism that I didn’t associate with intellect.

But since my son Ben was born I’ve had to acknowledge that my intelligence had little to do with anything I ‘did’ or ‘‘worked hard at’ but was, instead, simply a gift bestowed upon me at birth. I was lucky.

My son was unlucky and will always struggle mightily to learn and to retain information and ideas in his head.

He can’t join in the family games of Scrabble and he won’t enjoy the intellectual growth, social life and freedom of university.

And while I was sitting there watching our family play Scrabble and Ben was babbling to himself and reading or playing with his Star Wars characters – no doubt with intricate storylines playing themselves out in his silent imagination – I couldn’t help remembering that when I was pregnant with him, my SIL had said: “We have to be careful not to compare our children.”

Sometimes I envy my brother’s life. His child-rearing is coming to an end and he’s able to take great satisfaction and comfort in his children’s burgeoning independence.

But rather than wishing that Ben could be more like his cousins, I think my real wish is that my family better knew the inner world of Ben. They don’t know his sign language and they don’t know how to interact with him. I don’t know if they’re able to see past his odd and anxious ways.

I wish I could tell them about how Ben came up with “ARM” and “ALY” for Scrabble and they’d be as excited as I was. I wish I could tell them that when I was prodding Ben to send an e-mail to his dad yesterday, he chose the correct “too” in “I miss you too” and my heart leapt. But we don’t have a common frame of reference anymore. We’re still playing Junior Scrabble and they’ve moved on to post-graduate work.

I assume they feel sorry for us. I think that’s how I would have felt about our situation, before it happened.

8 Years!!!

"Come and grow old with me, the best is yet to be"

Eight years ago, I walked down the aisle holding on tight to my dad's arm and trying to control my trembling lip. At the front of the church, Andy waited for me. He was so handsome. I loved him, loved him more than I thought was possible.

Eight years and that love has grown as we have done life together.

I am honored that he chose me, and I cannot wait as we share the rest of our lives together.

A life of being, having and doing enough

I read about this book and my heart softened for a moment, and I took a deep breath in and out.

Doesn't it sound grand? A life of being, having and doing enough.

Wouldn't it be sweet if we felt we were 'enough' as parents of children with disabilities and that our children were 'enough' as well? Not 'enough' in the sense of 'good enough' -- but really, we wish we and they could be 'better' -- but 'enough' in the sense of 'full,' complete' or 'whole.' 'Enough' so that you could look at your child and only feel gratitude swell in your heart?

Instead, this morning I found myself feeling frantic about moving Ben's development forward.

I haven't had time to revise the communication app Proloquo2Go on his iPod and to actively get him using it. I gave the iPod to Ben on the weekend and he deleted Proloquo (a mistake, he said). My husband then spent ages trying to put the app back on unsuccessfully. He then attempted to put it onto the iPad I bought at Christmas, even though we couldn't afford it, because I thought it was a piece of technology Ben had to have. In doing so, he realized our Mac computer at home was incompatible with the iPad because it's so old.

So by the time I got to work I was feeling desperate that I HAD to buy a new Mac computer. In fact, I found myself in a place I've been so many times over the years with Ben. Where I latch onto some treatment or technology or experience that I believe will be life-changing for him. And I tell myself that if I can only get my hands on it, he'll be able to break through a disability barrier and realize himself more fully as a person. And I launch into all kinds of mental arguments as to why this is the only viable course of action.

Yet when I look back, I see I've sometimes made choices that weren't wise and didn't make sense -- or focused on the wrong things at the expense of others.

And it makes me wonder about finding a balance between forever questioning what 'more' can be done to help my child (in my case almost an adult) and starting from a place of loving and appreciating who he is, right now, and what we already have.

30 day blogging challenge-day 10

Argh, I am SO BORING. I really only half listen to the radio and kiddie music. I do, however, love the CD "Saints" by a local Catholic priest. I also love Wizard Rock and the CD seris "Jingle Spells" that the Leaky Caldron puts on every Christmas. My poor kids only know "The 12 Wizarding Days of Christmas" by Gred and Forge and "Christmas Rulez" by Harry and the Potters. I really should teach them something "normal", right?

Can you see me now?

I don't remember if I blogges about it or not but Georgie's first eye appointment was a complete and total BUST. When we walked in, the nurse asked if he could tell us shapes or colors. NO. He's TWO and non-verbal.

(Well, no, not totally but saying that is easier than talking about a speech delay or what have you.)

It went downhill from there. I think the doctor formed his, "Everything is fine" opinion before he saw Georgie. I was not impressed with the way he spoke to Georgie or Camille. Before he even dialated his eyes, I was ready for a second opinion.

A friend recommended a family eye care practice run by parishioners. We trotted over early this morning.

First, NEVER EVER EVER take four kids to the eye doctor. EVER. Enough said about THAT.

I was very pleased with this woman, who has three children of her own and really worked well with Georgie. She got down to his level, spoke to him and listened to my concerns. They dilated his eyes and then took the kids to play in a little playroom while the medicine took effect.

The good news is that his eyes are perfectly healthy and he uses both eyes equally. The bad news is she isn't totally convinced that everything is perfect. She feels that he might not be seeing "below" and wants us to monitor him for three months. We are to make sure he is looking down and noticing objects at his feet. In three months, she will see him again and then, if something looks worrisome, refer us to a neurologist. I heard the words "MRI."

I am actually doing okay with all this. I wish it had "just" been glasses and that we didn't have to wait 3 months but... I know, though, that if they have to do an MRI, I will be a nervous wreck!

Turning 30

Today is my 30th birthday, or like my friend Julie suggested, the first anniversary of my 29th birthday.

Somehow, it seems like a monumental age. I always thought of 30 as an age where you look back and look at all the great accomplishments you have achieved in your life, and all the ways in which you have made a difference.

I know in the eyes of the world maybe I have not accomplished much. Quite honestly, many times I feel that way myself. I have piles of dishes, piles of laundry, and endless meals to prepare. I am a cook, a maid, and a chauffeur. I wipe runny noses, play Barbies, and watch cartoons. I don't even get to shower everyday. And sometimes, when I get together with friends, we talk about the dishes, the laundry, and the kids. In the midst of all of that, I try to keep the spark in my marriage because I love my husband and want our girls to see what love looks like.

I never pictured myself here, where I am, at age 30. I pictured something glamorous, something romantic, maybe something that people would point at and say, "Ah, she got it!" I don't have that, not even close. What I have, is a life that has been offered to God, for Him to take and use as He wants. I have been broken, worked on, and changed. It has been an adventure, and although there have been storms and hard times, I think my 30 years have been beautiful.

I am married to a man that I still cannot believe chose me. He holds my heart, and I am lucky to have him. We try hard to make our marriage a priority and I am so thankful for that.

I have 3 beautiful girls. Ellie is everything I ever dreamed of, she is so full of life, and I am proud of her, so proud of my little girl. Nichole came to me and challenged the things I held as meaningful in life. Her extra chromosome had been an incredible blessing, she is my teacher of life. Nina has been a fiery furnace, and how God has used this little girl in my heart. What an incredible journey she has brought me through, and how lucky I am to have her.

I am 30 years old. Wanting to live a life that honors God, with everything I do, and with all that I am. And I am excited, excited to see what else in store God has for me.

(Yep, this is me when I was 4 years old)

More Gifts

7. Warm weather: We have had the perfect "spring thaw" the past few days. For the first time in months, we walked to school, soaking up the sun. The kids played outside while I  mopped up the kitchen floor and swept the garage. As a bonus . . .

8. Long naps- both babies napped for 3 hours! They were exhausted from all the fresh air. It gave me some time to clean the house and play with Camille.

9. Coffee- Oh, sweet necture of the gods. How I love you. I even love grinding my own coffee beans thanks to...

10. My Magic Bullet- Adam got this for me for Christmas. At first I was like, "Great! Another kitchen utensial to clean. Whoopie." But I LOVE it. It grinds my coffee beans, giving me lovely fresh coffee every  morning. It makes smoothies as good as the stores. I love the smoothies and the kids like them too. So healthy for them!

11. Kitchen Aide Mixer- I really wanted one when we were first married. However, according to the all-knowing Consumer Reports (from which we must live and die), the Sunbeam was "just as good." So we got a SunBeam. Then it died and Adam said, "Want a Kitchen Aide?"

Um, YES.

I talked to my friend, who is seriously the best cook ever, and she recommended the artisian. We found a refurbished one for cheap and I love it. I seriously look for things to bake just to use it! I will say that I prefer my Cuisinart food processer to make bread but other than that... I love you, Minnie The Mixer.

12. Baking Soda and Vinegar- The best cleaning agents, the cheapest cleaning agents and probably one of the most eco-friendly. These, combined with hot or boiling water, get my sinks, tubs and even fridge sparkling clean. And they stay clean! There's less build up in my sink now! Bonus!
Until last year, I didn't know you could use basic vinegar as a fabric softener. I started using it and, wow. Not only are the clothes clean and soft, but there is NO build up in my laundry soap trap in the washer. Before, I was pulling out the trap every few weeks to scrub the built-up softener and soap out of it. Ew. Now, it's nice and clean and gunk free! Yay!

Update to breastfeeding in our parish

The orginal post is here.

You can read a slightly edited and clarified version of the story here, at Nursing Freedom.

I've read all the comments, all the suggestion and talked to Catholics and non-Catholics alike. I've listened to wise cousel from people who know the DRE and those who don't. I've spoken to my mother, my sister, members of my parish and other nursing, attached mothers. And I came on a course of action.

That is, I did nothing.

I've decided that my strongest response and statement would be a peaceful, nothing-at-all.

It's not that I don't think the DRE's call was over the top. A parent complained and she had the right to let me know of that complaint. I think her concerns are valid and I agree we need to come up with a solution to the "problem."

I DON'T think nursing in a bathroom or in a locked room with the doors shut and the blinds drawn is the answer. I think it sends the wrong message about breastfeeding and what breasts are for.

A friend pointed out to me that these students aren't my children and, "Is it your job to teach them about this?" Well, yes and no. No, I am not their mother and it isn't my primary job to teach them about sexuality, breasts, babies and lactation. That should come from their home life. However, I am their RE teacher and it IS part of my job to be a living example of what they should see. Not only should I teach the faith but I should live it myself. This includes respecting the dignity of human life in ALL its stages.

By feeding my baby and keeping him close to me, I am respecting his need to eat on demand. I am respecting his need to be close to me, his mother. As a tiny baby (at the beginning of the class) his need to nurse and be with a loving caregiver are very real needs, not wants. By giving him this, I am respecting his stage of life.

Being pro-life isn't just about protesting abortion clinics or consuleing women at crisis pregnancy centers. Those are important tasks but they aren't the whole of the pro-life parts. Part of being pro-life, in my opinion, is repecting my children and meeting them at the stages they are at. When I brought Cole to class and fed him, I was doing this.

In junior high RE classes we touch on human sexuality and respecting our bodies. Of course, this information should primarily come from the parents but as an RE teacher, it is my job to re-enforce this idea. One of these concepts is respecting our bodies as temples of the Holy Spirit and practing purity and chasity. Our bodies are lovely and wonderful and they are ment to be treasured, not to be used to insite lust in others.

Prevenlant in our society is the idea that breasts are for sexual pleasure only. These kids are 12 and 13 years old and, believe me, they get the idea that breasts can indeed be sexual. But having a basic, non sexual function? Unless someone close to them is breastfeeding or works in the child birth industry (doula, LLL, lactation consultant) they probably aren't exposed to that idea much. What message, then, am I sending them by nursing Cole? I believe that I am telling them that it is okay to nurse in public, that breastfeeding it not shameful or something that needs to be hidden. I am showing them that breasts have a purpose other than selling bras or bodies; they can nourish too. As the mother of a daughter, I want her to know that breasts are for babies and as the teacher of teenage girls, I want to show them, by example, that their bodies are wonderful things that, when the time comes, can feed another human being.

I have changed nothing since the DRE called me and I have contiuned to meet Cole's needs. On days that I directly teach, he stays home. When I don't teach he may come with me, but now that he is 10 months old, mobile and very vocal, he is becoming a distraction. He stays home with my husband. When we go to Mass, I take him to the cry room to nurse and, because of where the cry room is, get a better view of the altar than in certain areas of the church!

When I do other work around the church, I often bring Cole with me. Many times, I am the only other mother there with an infant. When questioned, I simply respond that I am nursing and want the freedom to visit with people as long as I need, without running home to nurse the baby. I have had other mothers express that they wish they had brought their baby but didn't feel comfortable doing so. I often quote my friend, who once told me, "Laura, you can't be a pro-llife Catholic, follow the church's teachings on birth control and not expect there to be babies running around!"

Will bringing my child with me to functions and mothering him in the way that my culture teaches to mother, to feed him in the way God intended- in the way that God Himself made flesh was fed change anything? Not right away. It won't change overnight. But if one other person feel free to bring their young child with them to functions, perhaps someone else will too. A cascade effect could happen and then, yes, over time, things will change. Maybe people will be more comfortable with breastfeeding. Maybe it will become the norm.

Can a little nursing baby really change society?

Well, one did.

30 day blogging catch up

Day 2: The name of your blog
My all time fave book is Walden. Because we have a slightly hippie lifestyle and are on a constant quest to "go green" and all of us march to our own drummer, I became "WaldenMommy." When I started a new blog, I didn't want to be "WaldenMommy2" so I put the "and family" there. The offical title is "Life Behind the Red Front Door" because we have a red front door.

Day 3: A Photo of your and your friends
I don't have one- well, one I have premission to use on my blog anyway!

Day 4: A habit you wish you didn't have

Does yelling count? Cause, yeah.

Day 5: A picture of somewhere you have been to:
One friend put up a photo of Ireland.
Another put up a photo of NYC.
I give you... The Packers Staduim.

Day 6: Fave superhero and why:
I have no idea. Does Mrs. Incredible count?

Day 7: Someone or something that has the biggest impact on you:
Religion aside, how about . . .

and their father, of course!

Day 8: short term goals for this month:
Get back into the exercise swing of things because I have fallen off the bandwagon. Also, I need to get socks put away. Yes, I realize the latter is a lame goal.

Quick update

I was fascinated by this blog by Gina Gort who took a 10-day 'retreat' away from her family, which includes three children, two of whom have disabilities: Return to myself. It sounds wonderfully restorative.

We are holding a planning day for Ben on April 9 with the help of facilitators from Community Living. This is a two-hour session where we bring together some key people in Ben's life to look at his strengths and dreams and how we can support him in leading a rich adult life. If you've done this kind of planning, do you have any tips on preparing?

This is an interesting interview about the ethics of prenatal testing for Down syndrome. It's between Dr. Brian Skotko, a clinical fellow in genetics in the Down syndrome program at Children's Hospital Boston (who has a sister with Down syndrome), and Dr. Lachlan Forrow, director of ethics at Beth Israel Deaconess Medical Center.

Happy weekend! Louise

Periorbital Cellulitis

Wednesday morning Nichole woke up with a puffy eye. I was not too worried about it and gave her some benadryl. By nap time, I felt her eye had not improved and she seemed crabby. I woke her up from her nap and to my surprise her eye seemed much worse.

Thankfully, we have an incredible optometrist that was willing to look at Nichole's eye. He made sure she was tracking well, put some dye in her eyes and checked with a black light to make sure there were no scratches that would make her actual eye get infected.

He advised fro us to take Nichole to the doctor the following day and that she would need some stronger antibiotics to get to that infection before it became something more serious.

The thing is, Nichole has been taking antibiotics for the last 2 weeks. Amoxicilin and Zithromax did not help, and because Nichole has Down syndrome, her inside "tubing" is a lot smaller, so little colds can become big colds. A bad sinus infection, can get nasty. And for Nichole in particular, any cold means it will affect her eyes to some degree. Just never like this before, and this also did not seem to be her worse cold or sinus infection she has had. Really, we thought this wasn't too bad.
Thursday morning we went to see the doctor and sure enough, Nichole was on her third round of antibiotics, some pretty powerful stuff.

But then I woke her up from her nap and I could see blood in her eye. I rushed to the doctor with Nichole. Our doctor called an ophtalmologist who said to go to the ER where he would check Nichole. This doctor met us as the ER desk. As soon as he saw Nichole's eye and took a look at her he confirmed our fears. She has Periorbital Cellulitis, and in the hospital we will stay for a couple of days.

She is getting antibiotics via IV for 48 hours.

The good news is, we got her in right in time before it got worse, and they have drawn blood to see that the infection is not spreading and this seems to be working. She is being such a trooper. Hates the IV but has resigned herself and is letting it be. She is loving watching her shows and playing with the iPad all day.

On the home front, Ellie woke up with a fever. So we have a sick girl at home and one sick girl in the hospital. This same virus has been punching our family for a while. Last weekend I was sick and I had a fever for about 3 days. We have not been able to make it to church for 3 weeks! I don't see us coming this week either (Sunday is my 30th birthday!) I know this year has been hard for a lot of families, lots of people sick. So I have to say that I agree with the many who say, "I cannot wait for Spring!" We will forget that spring also means allergies, because for now, Spring means fresh air and less sharing of germs!

An open letter to parents

I'm delighted to share a letter written by Caroline McGraw (left) to her parents, William (back left) and Donna Fischer (right), in which Caroline recalls how her parents have cared for her younger brother Willie (back right), who has autism. Caroline writes about “how to see disability as opportunity” at A wish come clear.

An open letter to parents:
On what your children remember

Dear Mom and Dad,

As your 28th wedding anniversary approaches, I’d like to tell you what I remember about how you’ve raised Willie, and what I’ve learned by watching you.

My first memory is of a diagnostic center, the playroom where I waited as Mom and Willie met with the doctors. When you came out, Mom, you knelt down to hold me, and you were crying. I didn’t know what was happening, but I knew that something was wrong. I realized for the first time in my life that you were vulnerable, and that you needed to hold me. Yet what strikes me now is not the sadness of that day, but the beauty of your spirit. Mom, you reached out for me. You drew me in at a time when you must have wanted to push everyone away.

Likewise, you reach continually out on Willie’s behalf, seeking therapies and doctors and medications and activities and services for him. You encourage him in his interests, yet you also allow him the space he needs for himself, to be himself. You have taught me how to count his small victories, to see the steps of progress he makes as miracles.

Dad, I remember how many times you took Willie with you on work trips, on errands to Costco, to Edie’s for haircuts. You’ve made sure to include him in all aspects of your life. And I have never seen you act self-conscious or embarrassed by his behaviors, strange and frightening though they have been. You model a relaxed, take-it-as-it comes attitude for me and for others, and your corny humor dissipates many awkward moments.

In the times when Willie struggled with violent outbursts and self-injurious behavior, you took on bruises and cuts. You made sure to protect Willie from himself when necessary, and you’ve protected us as well. Rarely did you let the pain of keeping our family together show through. I can’t imagine what that’s cost you. You continue to keep the faith as Willie’s condition improves, and that patient trust is bearing fruit.

Of course, these things do not always come easily for either of you. I have seen you struggle. I have seen you doubt your decisions. I have walked with you into the places where there are no ‘right’ choices, only choices less terrible than others. I have sat with you on the floor of our upstairs hallway, none of us knowing what to do or how to carry on.

We have been totally at a loss, and yet we have never been 'lost,' because we have been together.

I love you, and I am amazed by you every day.


She is Not a Baby, Treat Her Like a Big Girl

About a month ago I posted about the challenges we face with Nina and her Cerebral Palsy. From our experience with Down syndrome, I know that parents are the experts.So in that post, I was "Calling all Cerebral Palsy moms"...and they responded.

Learning from other moms that walk the same road we walk is so helpful! Let me say it again, it is so helpful! They get it, they have been there, they know what it is like. The most helpful part I believe, is that right now I am a sponge and I am so ready to learn and listen to what these mom's have to say. I have been challenged in many ways and I have put some of their advice into practice.

My new friend Cary blogs at "About the Small Stuff." She has taken the time to e-mail back and forth with me as I ask questions. She has challenged me! Her son, Ben, has Cerebral Palsy (same type as Nina) and I have learned from their journey.

I came to realize, that I was treating Nina like a baby in the places where her disability is obvious. Carrying Nina is our normal, but it can become a bad habit that hinders her from becoming independent.

Nina's Cerebral palsy affects her mobility the most, and I have been so frustrated by her lack of desire to walk, that I never realized that I was treating her like a baby in the very area we struggle with! So if she needed to go potty, I was picking her up and carrying her to the toilet.

Not anymore. Success is found in the small things, one step at a time.  Now when she tells me she has to go potty,  I simply tell her to go. All I do is make sure that the toilet insert is on, but I expect her to do the rest. Kids her age do it, and so will she. It takes her a really long time. Her potty trips average 15 minutes, but that is okay, she is so proud of herself. If we go somewhere, I expect her to walk for as long as she can while she holds my hand or uses her walker. She actually has come to prefer holding on.

This new way has made life easier for me, less demanding physically. On the other hand,  it has made it more challenging and physically demanding for Nina, she is being pushed.And while there are times where we have to help her, those are amazingly fewer that I thought.

And the results from this change?

Nina said today, while she was taking off her shoes and braces, all by herself, "Mom, I wish I could walk. I want to walk"

Her words touch my heart and bring me to tears. That statement right there, speaks so much more than the actual words. She wants it, she really wants it!

'In some ways we have a stronger family unit'

This is part of a BLOOM series of interviews with parents who have more than one child with a disability. Andrew Levin (above centre) is dad to Kenneth, 17, and Cameron, 14, who both have autism. Thanks Andrew! Louise

BLOOM: How are the boys affected in everyday life?

Andrew Levin: They’re fully functional in terms of changing, toileting and eating, but they can’t be left to their own devices for any length of time. Kenneth is somewhat verbal but Cameron has very little vocabulary.

BLOOM: What emotions did you experience when you learned Cameron also had autism?

Andrew Levin: I still remember the exact moment when I realized there was a bloody good chance that Cameron had autism. I went to pick him up at daycare – he was less than two – and all the kids were gathered in a circle having some sort of reading or social activity and Cameron was on the other side of the room playing Lego. I remember saying: “Uh oh.” I knew from Kenneth so well that if Cameron was indifferent to what the other children were doing that wasn’t good. In some ways, because I expected it, it wasn’t as difficult. But in some ways I was more devastated because with Cameron being my second child, I knew what autism was. The writing was on the wall. There was no asking “what does this mean?” or relying on someone else to tell me what was involved. I think my wife Nellie and I were both equally devastated, in our own ways.

BLOOM: What practical challenges do you face?

Andrew Levin: It’s one thing to restructure your life to meet one set of special needs, but it’s more complicated to restructure life to meet the needs of two children who are quite different, even though they have the same diagnosis. For example, we can leave Kenneth alone for short periods of time in the house if he knows where we’re going and that we’ll be back soon. But we can’t leave Cameron by himself for even five minutes, because he’s much more mischievous and could get up to something. Kenneth likes going to sports events and we’d like to go as a family, but Cameron can’t stand huge auditoriums. On weekends, when most families go out as a group, we often split up. I take one of the boys somewhere and Nellie takes the other.

BLOOM: Are there other issues?

Andrew Levin: What the future holds is a big concern. I’m a man in my mid 40s and I have two kids who can’t take care of themselves. We have real concerns about down the road when my wife and I can’t care for our kids anymore.

BLOOM: What strategies enable you to manage?

Andrew Levin: Good support is absolutely essential. You can’t do this alone. My wife is a stay-at-home mom and we have a selection of caregivers we call on an ad-hoc basis. In the summer we have a caregiver for each boy for several hours each day, so that each can do the things they enjoy doing. There are resources out there and you have to investigate them. Some may be a waste of time but others are immensely valuable. As tough as it’s been, we couldn’t have done this without support and assistance. The other thing is you shouldn’t hide yourself away because of your children. You need to be out there exposing your children as much as possible to the real world. You don’t want to find yourself in a situation where you’re cut off in your house and it’s just you and your child with a disability. You want to keep visible and active.

BLOOM: How do you relieve stress?

Andrew Levin: My wife will head out for a few hours to get away and I have time to myself at work and go to the gym four times a week. I find that refreshing and it helps clear your mind. The reality is we’ve been dealing with this since 1997 so while it’s stressful, it’s almost our lifestyle now.

BLOOM: What have you learned?

Andrew Levin: I like to think I get less stressed about things that aren’t important. I’m more easy-going. I have no desire to have a job where I work 80 hours a week. Seven years ago I switched from being a lawyer working long hours in private practice to doing legal work for an insurance company. That gives me the flexibility to be home by 5:15 and spend time with my kids. One positive thing about kids with autism is that they maintain an innocence to them which makes them enjoyable to be around – even when they’re older. If my sons didn’t have autism at age 17 and 14 they’d want nothing to do with me. They’d be hanging out with friends. But my kids like to be around me. Notwithstanding all these other issues, in some ways we have a stronger family unit.

Five simple ways to show love

Caroline McGraw posted on BLOOM recently. She has a fabulous blog called A wish come clear: how to see disability as opportunity. She has a younger brother Willie, who has autism, and she is a program director at a L'Arche in Washington, DC. L'Arche is a non-profit, faith-based organization that creates homes where people with and without intellectual disabilities share life together.

I liked her Valentine's Day post: 5 simple ways to show love (today and everyday). Check her out! Louise

Answering some questions

How do I sign up to receive books and write reviews? I have been looking around on the website bit I can't find anything about it.....

I get my free books from Blogging for Books. It is a Waterbrook Multnomah program. Just go to the Blogging for Books website and click on the "Sign up Today" tab.

As a side note, if you notice that there are words highlighted on my posts, it means it is a link, so just click on the link and it will take you directly to the site I linked to.

I liked what you wrote about advocacy and I do think I'm still too emotional though waaay better than I was. How do you get past that?

I can only speak from personal experience. For me, time has made a difference. Also, some family and friends have shared with me that they were hesitant to say anything to me about Nichole or Down syndrome because they were afraid of how I would react towards them. I don't want that. I want to be open, to be understanding, and to be gracious. One gentle step at a time, nobody likes to be pushed in the deep end without a warning.

And that said, I know I still have room to grow!

How our marriage beat the odds

I was captivated when I read Heather Hamilton's blog: Diary of a Supermommy. So imagine my surprise when I looked out my office recently and saw Heather (above) and Zack (left) in Holland Bloorview's library. It was a wonderful meeting and now I have a fabulous guest blog to share that I'm sure many of us can relate to. Thank you Heather! Louise

How Our Marriage Beat the Odds
By Heather Hamilton

Marriage is hard work. Add that to a life with kids, even harder. And with a child with special needs, the odds are against you. In fact, some studies show the divorce rate among couples who have a special needs child is up around 85 to 95 per cent! Our marriage has taken its own journey dealing with issues that have been exacerbated by the stress of a child with serious medical problems. I know we are not alone.

From the start, my husband Paul and I each knew the other was “the ONE.” Paul and I adore each other – we have for almost 15 years now. Like most couples, we had certainly had our ups and downs. When our first son Ty arrived, we LOVED being parents together and had a great family life! We took Ty everywhere. When we couldn’t, babysitters were easy to find so dates were frequent! We could talk more when we only had one son around. It was certainly less chaotic with one than three!

When we decided to grow our family, we found out we were having twins! From the moment we heard the news, we were emotional and scared. I was worried about whether I could DO twins. My husband worried about supporting a family of five financially! We never imagined that money would be the least of our problems. When twins Jayden and Zack were born, our little Zack was diagnosed with a genetic problem resulting in many medical issues, including a rare and life-threatening heart defect!

Our family and marriage were forever changed. From the minute Zack was born, we became parents to a child with special needs and advocates, doctors, caregivers and cheerleaders. At the beginning, we were united in our fight to save Zack's life – and love our other boys as if their life had never changed. In those first weeks, we were back and forth daily from the hospital. I would stay all day and Paul would visit early mornings and late at night. We barely saw each other, but we cared equally for our boys. There was nothing that I did that Paul wasn't doing – whether it was late-night feedings, diaper changes with Jayden, driving Ty to JK or housework. We were a team through the hardest time of our lives.

But as time went on and Zack's needs began to reveal themselves – controlling feeding and GERD, discovering his hearing loss, failure to thrive, seizures and physical delays – my role as Zack's advocate/caregiver/doctor became all consuming. I was ‘CEO’ of his little life and I put my all into it. I handled all therapy appointments, with Jayden in tow. I took both boys down to Sick Kids for follow-ups and juggled the feeding and naptimes of two very different boys. The rest of my energy was for giving extra attention to Jayden and Ty. That left nothing for Paul.

My life was a circus, as any mother of a child with complex needs can understand. But while it was stressful, it was also empowering! My wonderful and complicated son brought out so many qualities in me that I never knew I had. I liked feeling confident that I knew my son and what he needed most. I loved connecting with other parents in the special needs community and found comfort in starting my own blog.

At the same time, my days and nights were exhausting and I was overwhelmed. I look back on those days and truly wonder how I did it. I was isolated. It was so hard to leave the house with the twins, carry all of Zack’s equipment and be constantly on alert for the next seizure. My maternity leave was not what I had planned. No playgroups, music classes or baby yoga time. We moved from appointment to appointment and our house was a revolving door of therapists.

I was desperate for adult contact and I was jealous that Paul had it. When my tired husband walked in the door I wanted to talk to a grown up. He wanted to stop talking after a day full of it.

Zack’s needs continued to grow, including insertion of a g-tube. Meanwhile, I grew more resentful, depressed and grumpier!

Why did I feel so alone in this? Why did HE come home for playtime and I had the hard work? Why was I the only one going to important appointments, fighting for our son to get services and caring for our three children? More and more I stopped asking for help from Paul and just did it all myself. Many days I just wanted a “thank you” from my husband, since my son didn’t have the words to say it to me. I just wanted to be appreciated. In fact, I really wanted to be a wife, not just a ‘mom’ and ‘nurse’ to my son.

At the same time, with our decision to give up my career to care for Zack, Paul became the sole breadwinner. He was consumed with his role of supporting the five of us and was exhausted when he came home. He put so much pressure on himself to succeed – meaning extra-early mornings and late nights in order to ensure his job was secure. He was great at helping with laundry and cleaning, but to me that was never enough.

Paul came home most nights in time for bath and bedtime with the boys and he loved playtime with all three, in particular Zack. Paul had been the one to travel with Zack down to the hospital his first night and he had been there when Zack arrested twice. What I learned later was that this was an image Paul couldn’t get out of his mind. It haunted him everyday – and still does.

Paul was exhausted and stressed to the limit. He had crazy demands at work and at home, a crabby wife and he didn’t feel his efforts to keep our family afloat were appreciated. Because I had taken Zack’s care as my priority, he felt left out of our son’s life and ignored. He had become my last priority.

Life, family and marriage were not what we planned. We were sad and overwhelmed by the magnitude of our responsibilities. But we weren’t able to see the stress on the other person. We were so wrapped up in our own daily priorities that we forgot and neglected each other and took each other for granted. We were stuck.

Our marriage was at a crossroads. We both had to change. The journey with our son had taken us to a place where we either needed to listen to each other again, make changes and put our marriage on our "to do" list, or we would become another statistic. We made a choice to make it work and be a team again.

Our first step was to get it all out!

We talked and talked about what we’d been feeling, drank a lot of wine, saw a counselor, read lots of fabulous books together and cried A LOT! It turned out we were feeling the same things: pressured, stressed, neglected, unappreciated, exhausted, guilty and even jealous. We acknowledged that we felt grief...grief for the loss of our dreams for our family and for our son. We were scared for Zack’s future, the future of our other two boys and ourselves.

Paul had never really spoken the truths about Zack’s delays and health issues. While I was living them each and every day, Paul had never used the word “special needs” when referring to Zack. Through this process he learned to accept the diagnosis and the words that came along with our reality. I realized that I needed to begin to let Paul into that world, not shelter him from it. He was willing to share the burden of the tough visits so we did the “big” appointments together. Paul became a partner in Zack’s journey and I accepted his help, so that I could have time to be a wife.

It was great to finally be listened to and to be a listener. Feeling vulnerable and being totally truthful reminded us of just how much we loved and needed each other.

I know that we are not the only couple who have been up against similar struggles. Having a child with special needs seems to amplify all the regular problems that a husband and wife go through. This might not have happened in your marriage yet, and it may not ever. But we wanted to share our story and some of the tricks that we found to allow our marriage to be the special, loving and long-lasting relationship that we both deserve.

  1. Find books to help navigate your way through. Married with Special-Needs Children, More Than a Mom  and any of John Gottman’s books on marriage are our favourites. 
  2. Admit that you both need to make changes to make this work. It takes two to create and repair your problems.
  3. Talk to each other first! Speak honestly about problems as they exist and speak the truth – it’s hard to admit that you're frightened, sad, angry or even disappointed, but it can be liberating to have your best friend, your greatest love, be the only one to know how you are feeling. Share the good, the bad and the ugly.
  4. Build a network of good babysitters and supporters. So easy to say but look everywhere – grandparents, godparents, neighbours, even nurses or nursing students can all be a great resource.
  5. Date again and bring back the fun! A movie, dinner or if you are truly lucky – a romantic night or two away! Even a “home date” after the kids are asleep...turn off the TV, ignore the blackberry and reconnect! Flowers “just because” still make my days!
  6. Find individual therapists, marriage counselors or spiritual advisors for regular or monthly "check-ins." You do this for your child, so why not each other? The needs of your child can be like a roller coaster and have peaks and valleys. Have supports in place for those valleys.
  7. Give each other time to do the things that you love to do alone. For Paul, it’s soccer each Saturday. For me, a mani/pedi with some friends!
  8. Be IN it together! While one of you will be predominantly responsible for your child's care, go to the BIG visits together, make the BIG decisions together and be advocates together.
  9. Take one day a week to send reminders to each other! Send each other a text, email or letter with reminders from your past. What brought you together in the first place? Paul and I both look forward to hearing what attracted us first, what we admire in each other, our funniest story or even our most embarrassing moment together!
  10. Renew your commitment to each other –  write a letter, poem or renew your vows. We were fortunate enough to have my parents stay with the kids so we could go to Vegas together. Paul surprised me with an Elvis wedding to reaffirm our vows, celebrate what we had learned about each other and get excited about our future...whatever comes our way!

A little girl, learning to read & Bob Books Giveaway

March 1, 2011 announcement

The WINNER of the Giveaway is:

Family H and their little girl, Violet.

Sabra let me know that her daughter put 8 pieces

of paper, numbered 1 through 8 (for the 8 entries)

into a bowl. She drew out the piece of paper with

number 6 and that represents Family H.

Sabra told me that after her daughter chose the

number....6 she said:

"This is cool to pick another child who has ACC like

me to get Bob books the same as me. I hope they help

reading with the other child."

Her mom said:

She then asked me who is number 6. I told her

I don’t know but we can check tomorrow to

see who the winner is. She was very excited about

seeing who won.


Thank you to everyone who entered.

You are going to LOVE this story!

AND the prize revealed at the end of the rainbow

I was contacted by the mom of a little girl who has

partial agenesis of the corpus callosum. I have known

the mom, Sabra, for a few years. Her daughter struggled

with learning to read and I remember when she told the

jump for joy story in the ACC support group about how

her child learned to read her first book.

Sabra enthusiastically wrote a heartfelt letter to the

Bob Books company:

"I would like to say thank you to whomever wrote these wonderful

books. I have a 6 ½ year old daughter born with congenital

hydrocephalus with a VP shunt and partial agenesis corpus

callosum. I tried hooked on phonics since this is what I had

used with my other children but she still struggled with trying

to read. She started first grade the day after Labor Day in

regular classroom with resource for language arts. She brought

home books from the library, AR books that were 0.6 and 1.0

reading level and cried because they were too hard and said

she couldn’t read. This about broke my heart when she said

this and how discouraged she was in regards to reading. When

I was in Barnes and Noble a week and a half ago to buy books

for my other children and myself, I asked the sales clerk on

what they recommended to help my daughter with reading. They

recommended your books and said they have teachers coming in

all the time purchasing them. I had never heard of these before

but I decided to give them a try and bought the first set,

beginning readers.

You have to understand this has been hard on me since we are

so big on reading. I have been working with her and trying to

find what worked for her to help her learn to read. It was

amazing and beautiful to see her little face light up and the

biggest grin after she read the first book. She currently

finished book 9 tonight and is doing amazing, we read a book

a night. She may not remember she just read that word on the

previous page but sounds it out and reads it without getting

discouraged. What helps for her is the small size of the book

and only a few words on each page. She may also struggle with

comprehension and understanding that reading a book is a story

but I know we will get there eventually. Your books have helped

us give her the confidence to read and the foundation on which

reading begins.

I will be going back to Barnes and Noble this weekend to purchase

set 2 for my daughter. Again, thank you so much for having this

program available and the insight to whomever wrote and developed

these books to give my precious daughter a chance to learn to read.

I don’t normally write comments and feedback but I am so impressed

with the books and the positive rewards, I felt compelled to send

one in regards to the Bob Books.

I now tell everyone I know including parents on hydrocephalus and

ACC online groups I belong to about how wonderful Bob books are.

I will make sure I have the money available when she is ready for

the next set."

A very happy parent in Virginia,


Bob Books Reply Letter to Sabra:

"What an amazing and wonderful letter. Thank you so much for writing.

I am forwarding your letter to the author, Bobby Maslen. She will be

thrilled to hear about your daughter's success. After all this time,

she still loves to hear about each and every child that learns to

read with Bob Books. (She wrote Bob Books over 35 years ago.) We

are so proud when we can make a difference, especially for

children that struggle.

You might like to see a video (just posted today) about how Bob

Books came to be. I hope you can tell from her face, how much

Bobby cares.

Thank you again for your very touching and heart-warming letter.

I am so glad we were able to make a difference for your daughter.”

Best, Lynn


Lynn Maslen Kertell

Author and Managing Partner, Bob Books Publications, LLC

This was a story with a very happy ending. But

that’s NOT the end...

Sabra, the little girl’s mom, also let me know that

Bob Books would like to give away a Bob Books

Set 1 Beginning Readers and a Bob Books Set 2

Advancing Beginners to a family who has a child

with Agenesis of the Corpus Callosum.

Sabra asked if I would host the Bob Books Giveaway

on the ACC blog on behalf of her and her daughter.

I said…absolutely YES, with pleasure.


1 Bob Books Set 1 * Beginning Readers


1 Bob Books Set 2 * Advancing Beginners


1. Please enter only if you have a child who has agenesis of the corpus callosum or a corpus callosum disorder.

2. Only US residents age 13+ are eligible to enter (due to

licensing issues we do not ship to Canada or overseas).

3. One entry per username & e-mail.

4. Answer the following questions:

Why do you want to win Bob Books for your child who has ACC and How do you think it would help your child with reading?

5. Please include your e-mail and username in your entry so

you can be reached if you are the winner.

6. Contest winner will be randomly chosen on February 28,

2011 by Sabra’s daughter, who inspired the Bob Books

Giveaway. : )

7. Contest Begins: February 14, 2011

8. Deadline Entry: February 27, 2011 11:59 pm, pacific standard time


If you are the Winner you will be asked to give out your mailing address which will be forwarded to Bob Books who will ship your free set of Bob Books 1 & 2 directly to you.

Be sure to explore the
"Entire Family of Bob Books"...

Thank you to Bob Books for sponsoring the Giveaway

from your heart in an effort to help another child,

who has ACC, learn to read. ♥

Thank you also to Sabra for allowing me to host the

Bob Books Giveaway for you.

A great BIG congratulations to Sabra’s little girl

for learning to read. You did it!!


Thank you to everyone who entered.

*note: I did not receive any merchandise or monetary gift

for hosting this Giveaway. This Giveaway comes from the

heart of Bob Books and is the result of a mother’s joy in

hearing her child who has partial ACC learn to read for the

first time and seeing her child’s confidence level soar.

Day One

Cole and myself at Camille 5th birthday party!

1. I always wanted four children. There was a family at a pool where I worked in Texas who were the nicest, most polite people. The children would come up to swim with their mother and they all loved each other so much. The mom would sit on the deck and say, "Good job son!" when her son jumped off the diving board. I remember wanting to be like her.
2. Adam nicknamed the kids "The Herd" and it stuck. I love it.
3. We never ment to name all our children after people; it just happened that all the names we liked were also family members we love and admire.
4. I've known my husband since we were 15. We met at Mt. Vernon in Washington, DC and were pen pals for years before we met in person for the second time. We still have all our letters to each other. I want my chilren to read them when they are older.
5. I have a "thing" for Nativities. I love them and Holy Family Statues but  Mary MUST be holding the baby Jesus.
6. I have always been a birth and baby junkie. I love babies.
7. Until Cole was born, I understood, vaguely, how people could be Providentailist or just leave their family planning up to God. I mean, if they felt called to do it, who was I judge? After Cole was born, I GOT it. I truley get it and I wish we could be that way.
8. I obviously enjoy being a mother and feel filled in my role as a wife and mother, although I do need a break and regular dates with my husband.
9. I don't listen to music. I should, but I don't. I can't figure out what my "type" of music is. Soundtracks, maybe? I can hear something and know I like it or not but I can't get on iTunes, click on a type of music and know I will like it.
10. I don't like nick-nacks but I enjoy shopping for home decor if I know just what I am looking for.
11. My maternal grandmother died over 25 years ago and I still miss her. When I am feeling really sad about it, I put on the necklace that was hers that my mother gave me. I feel connected to her through it.
12. One of my most emotional, moving moments of my life was when I handed each of my children to their great grandparents. Sorry, kids, but it was especially powerful with Joseph, the first great grandchild and the one named for our grandfathers who passed away. When Grandma Jo and Nana (the women who were married to our grandfathers named Joseph) held him for the first time, I wanted to cry. It was powerful handing the next generation to members of the greatest generation.
13. The hardest thing I have been through, to date, is the NICU and Cole's pregnancy. I used to think that I would give anything to go back in time and change the NICU experience. While I wish my son had been born healthy and term, I would not change the lessons learned from those experiences for anything. I firmly believe Cole is here because Georgie was a preemie. Now I am a birth, baby and preemie junkie because of him.
14. I feel like I was a different person before Nov. 19th. I look back at who I was then and don't recongize myself. Sometimes. I don't recongize myself now. I am more guarded. I am working on becoming who I was, while carrying on the lessons and gifts from then.
15. I love my house. We went through alot to move and I believe we ended up in the perfect spot. I love our friends and life here.