The kindness of strangers

























Our cat Paisley had a favourite sleeping spot -- smack dab in the middle of the Periwinkle and Ivy on our hilly front garden. Every day I'd come home from work and there's she'd be, sitting in the sun. Her weight had created somewhat of a nest, depressed into the ground, that encompassed her small, silky body and on which no foliage would grow. She lay curled up in the middle of the hill as if it was the most natural thing in the world.

Last night I had to say goodbye to Paisley curled up in a box.

It was after 11 when we had a call from animal services telling us that  neighbours had seen Paisley hit by a car. They had taken off her collar and called with the registration number. Animal services gave us the neighbours' number so we could find out where Paisley was. I expected animal services to say they were coming to pick her up, but instead they said we needed to get her and put her in the freezer for the night and bring her in the next day (no comment).

D'Arcy called the neighbours, who we didn't know, and we walked timidly to the top of our street and around the corner where they directed us. It was the still of midnight: so quiet, so peaceful. D'Arcy was about 20 feet in front of me, carrying a box and towel and I was hanging back, hands clasped.

The couple who had been sitting on their porch when the accident happened were waiting.

"Poor Paisley" D'Arcy said as he dropped to the ground where Paisley lay, half on the street, half on the sidewalk, and put his hand on her.

The driver didn't stop, they said. They took off her city registration tag and ran back inside to call animal services. They came back with their cell phone to find Paisley dead and called friends of theirs who had cats to ask what they could do. They were as distraught as we were. We didn't know this couple but they knew Paisley, who they said enjoyed playing in their garden.

"We're so sorry" they kept saying. "We wish there was something we could do."

D'Arcy wrapped Paisley up and we placed her in the box. The couple pointed out their house and gave us their street number and encouraged us to come back if they could help or if we had any questions. They were strangers, but they were so kind, so consoling.

In a world that often seems cruel and competitive and impersonal, their actions were a reminder of the goodness in people.

We took Paisley to an all-night vet clinic so she could be cremated.

Paisley was our daughter Lucy's cat, and she and her sister were devastated. Ben slept through the event. When told this morning, he signed "no" over and over again.

He and his brother went off for two nights of camping with a few other children with disabilities and three adventurous workers.

One of them had just told me about a day recently when she was with Ben at home. He went upstairs and when she came up later she found him lying on our bed, patting Paisley. She loved to curl up in Ben's wheelchair on the porch. Nice memories.

A Wedding

Last weekend, my sister married one of my good friends. But before I tell you more about the wedding, I will tell you more about my sister Alex.

Being 6 years older than her, I did not receive her with excitement, but rather jealousy. The first day she was home from the hospital, she was peacefully sleeping in the middle of my parents bed. I had been told to be quiet too many times and to be careful with the baby. Something was wrong, I used to be the center of attention and this tiny baby was ruining my life! So I pinched her. Hard enough to wake her up and make her cry. I was not a very nice older sister. I was one that would have told you I had an annoying little sister. Truth be told, I was too busy for her, to caught up in my own world to pay attention to my sister. When I left for college, she was only 12. Somehow, in that time, she grew up. Thankfully, so did I.

While I cannot make up the time lost and be the big sister I wish I had been. Now I get to be not just a sister, but also a friend.  And not just any friend, a best friend. I love Ale dearly and I am blessed to have hr as my sister.

Now about Jon. He was a good friend of mine from college. We worked together at camp and we even went on a missions trip together. When we were in Ukraine adopting Nina, Andy and I were pretty discouraged. But Jon was there praying for us and sending us messages reminding us of why we were there, encouraging us to stay strong. In one of those messages I said, "Jon, I want you to meet my sister!" And like they say...the rest is history.

The 3 sisters

 Ellie: The flower girl.

 My mom with her 3 girls.

Alex and I

Alex with our aunt Martha. She is one of the most favorite people in my life! 

The sisters at the reception.

Nichole danced and danced and danced and did not like the fact that I was trying to get her picture taken.

Ellie danced and had a lot of fun too.

Nina also had enough people come and ask her to dance.

Congratulations Jon and Ale! We are so happy for you! 

Boy with Asperger's, 9, handcuffed by police at daycare

I heard an interview on CBC at lunch today about this case. A Toronto child with Asperger's, ADHD and Oppositional Defiant Disorder had a melt-down at a daycare, and was placed in a separate room where he barricaded himself and began throwing furniture and paint around. The boy later said he was being bullied and called names in the lunchroom. The police were called, broke open the door and asked the boy to lie down, which he did. Even though he was now lying on the ground, the boy was handcuffed.

I just saw the Canadian Press news story in the Globe on the subject. The story, which seemed to be derived from a CityTV report, is seriously lacking in details, some of which come to light in this Globe editorial and this story in the Windsor Star: Toronto Police handcuffed mentally-challenged boy after 'uncontrollable' behaviour.

The news story in the Globe produced over 1,000 comments, and I was struck by the utter lack of knowledge about Asperger's and Oppositional Defiant Disorder (only the former was mentioned in this story). Asperger's is a neurological condition and ODD is a psychiatric disorder.

This was not a case of a 'bad' kid gone 'berserk,' or a discipline issue, or of parents who can't control their kids, as many commenters suggested.

"I'm wondering why a child with Aspergers and other "disorders" is even in a daycare in the first place?" wrote one. "Maybe the parents should have someone look after him in their home. Oh, wait, that would cost more money."

It's lucky he wasn't tasered, pepper-sprayed, slammed to the wall, beaten up or piled on top of by police, said others. "Being a child with 'special needs' doesn't release him from any responsibility," wrote one. "Don't allow special-needs children into classrooms," said another.

I do not know a lot about Asperger's or ODD.

I do know lovely children who have these disorders and the struggle their parents face to try to get them the help and supports they need and to convince people that their children do indeed have disabilities. I know how challenging it is for parents to educate daycare workers or school staff on the techniques that help prevent and diffuse their children's behaviour. There are often insufficient staff, staff who aren't properly trained, or staff who don't follow through with known calming techniques because they don't believe the child has a disability in the first place.

Then I read this Windsor Star report of the event and my heart just about broke when I got to the last paragraph.

Toronto police Const. Victor Kwong said the boy, who in addition to Asperger syndrome, is also diagnosed with ADHD and Oppositional Defiant Disorder, became angry in the daycare's lunchroom when other children were bullying him and calling him names.

"What teachers say is that he became uncontrollable," said Kwong.

A daycare worker, fearing for the boy's safety and that of the other children, called police after the boy barricaded himself in an empty classroom and started throwing around chairs, tables and paint.

Kwong said when officers arrived on the scene, they asked the boy to lay down on the floor on his stomach, and put him in handcuffs.

He said the boy was only in handcuffs for about five minutes, after which he calmed down and was chatting with police about his hobbies. "When he left, he hugged the officers and the nurse," said Kwong who stood by the officers' decision to cuff the boy. "This worked. He listened," said Kwong.

Ellie is 6

What busy weeks we have had! I did not get to update the blog and share that I now have a 6 year old!

Remember when you turned six? The night before my 6th birthday I sat at the edge of my parent's bed, alone in their room. I kept staring at my left hand, all 5 fingers spread apart, then I would slowly bring up my right pointer finger and say "Seis!" The thrill of having to use TWO hands would make me giggle and feel butterflies in my stomach.

While Ellie did not do this to my knowledge, she is still her mother's daughter and the excitement over turning 6 was quite obvious around the house!

Lots of new things happen when you turn 6 (in case you did not know)
  • You get to chose a new favorite color

  • You get to become your favorite character all day on your birthday

  • You get cake

  • Your family is supposed to be waiting for you in the morning and jump up and break into song as they sing happy birthday

  • You get  a birthday party

  • It means you are a big girl (you know, since you need TWO hands to show your age...unless you use sign language I suppose)

  • You can do your own hair, no need for mom, regardless of what she thinks

Ellie had a birthday party with some of her new little friends. They were all dressed like princesses and we had a lot of fun. We had games, crafts, and of course a pinata! We are thankful for the new friendships that she has here. Overall, she has done the best as we have transitioned to our new town. We thought she would struggle the most and here she is showing us what loving and living life is all about.

Wow! Six years sure go by fast. I promise every night since she was born, I would lay Ellie down to sleep and she looked just the same the following morning. So how did she get this big!

Being Ellie's mom has been a joy. She is the little girl I always dreamed of. We have fun together, we enjoy each other, and we laugh a lot. Whenever she is upset or angry with me, she writes me notes to express her feelings, something that I really do love about her as she controls her temper that way.

She has a heart full of acceptance and tenderness towards other people. She has the capability to look at every person's potential, and many times she helps me see that in others. Funny how it is your kids that tech you some of the most important lessons in life.

I am proud of her...incredibly proud of her. I love my little princess with such strength.

My sweet Ellie Belly,
As we celebrate your 6th birthday, I am thankful that God gave you to us. it is a  great honor to see you grow up, mature, and care for others.
I love you more than you know.
Love
Mommy

A hand to hold






















Yesterday Ben and I visited his new high school. It’s a large regular high school known for academics and sports. It has a unit for students who are deaf or hard-of-hearing. They take some of their classes on the unit and are mainstreamed with interpreters for others.

Ben and I had a tour with the principal. Ben saw some classes and took the opportunity to sit down at desks as we were doing a lot of walking!

The principal and I are wading into uncharted territory as this school would not typically support a student with Ben’s disabilities.

My message was that I simply want a better education for my son. My goals are that he improve his reading, keyboarding and numeracy, have access to some general curriculum, and have the opportunity to make friends, learn social norms and have a sense of belonging (the latter is a tall order, I know).

They don't really have a plan in place for how they will support Ben. They are scrambling this week now that teachers and board staff are back from holidays. I am grateful that they are willing to meet with an inclusion expert to get some advice.

Ben liked the idea of a new school once he was there.

After our visit Ben and I went for a treat at McDonald's. We had such a nice time sitting side by side and eating our burgers (I even enjoyed my cheeseburger). Ben was thrilled because I let him get his coke.

After we went to the dollar store where Ben got a ladybug character. He was demanding that we come up with a name for it last night, but I'm hoping that with his new writing skills he can make up a name himself. I was able to get him to write ‘I love Jessie’ -- with reference to the cowgirl -- with one spelling mistake.

As we walked along the street I sometimes took his hand as it's easier for him to walk with support as he still limps with the leg-length difference caused by the surgery. But after a minute or two he would always take his hand away.

Later that day I was racing home from work when I saw a handful of people walking together on the sidewalk. I recognized right away that they were adults with developmental disabilities and their workers. One adult was walking very slowly with her head down and her hand in a worker’s hand. She wasn't being pulled along or told to hurry up. She was allowed to walk at her own pace. I stopped to watch this slow moving band of people in the midst of the typical city frenzy.

I couldn't help thinking: ‘I hope Ben always has a hand to hold like that, even if it's not mine.’

Cloudy thinking: Cognitive therapy tackles it















Several years ago I read Feeling Good: The New Mood Therapy by Dr. David Burns, an adjunct clinical professor of psychiatry at the Stanford University School of Medicine. Dr. Burns has written a number of bestsellers about how the way we think shapes the way we feel. When people are depressed or anxious, according to this model of cognitive behaviour therapy (CBT), they have distorted thoughts flooding their minds – often that they're not even aware of. If they can be taught to identify these distortions and replace their irrational thoughts with more realistic ones, their mood lifts. I found the approach effective and liked that it challenged common beliefs such as the idea that work and ability determine worth.

Dr. Jacob Towery is a colleague of Dr. Burns. He is on the adjunct clinical faculty at Stanford and works with children and adults in his private practice. During a two-year fellowship in children's psychiatry at Lucile Packard Children's Hospital, Dr. Towery found that CBT – which has since evolved into something called TEAM therapy – "has real-world application for parents of children with complex disabilities." I wanted to know how we could use these techniques to improve our lives.

BLOOM: What are the basic principles of cognitive behaviour therapy?

Dr. Jacob Towery: Thoughts and behaviours and feelings influence each other. There are going to be events that happen in life, but the events themselves don't necessarily cause us to feel a certain way. It's more what we tell ourselves about these events that influences how we feel, which then influences our behaviours and further influences our thoughts. If we can change how we think about things, then we can change how we feel, which has a dramatic effect on our mood and behaviours.

BLOOM: Is CBT unique in challenging common values about ability and worth?

Dr. Jacob Towery: CBT was one of the first types of therapy to try to address these beliefs and Dr. David Burns was one of the founders of CBT. David has now developed a new model of therapy called TEAM which is founded on CBT but focuses on empathy at a very sophisticated level – helping people feel understood – and respecting the patient’s agenda. I think these therapies focus the most on challenging common beliefs about ability and worth.

BLOOM: How could CBT be helpful for parents of children with disabilities?

Jacob Towery: One benefit is that a parent can work with someone who can understand what they're going through at a very deep level and empathize and validate what that experience of raising a child with complex needs is like. The other is that if the parent is feeling depressed or anxious as a result of what they're going through, that's changeable. The child's disability can't be changed, but the parent can learn to see it and experience it differently and to come to a different place in how they feel about it. It is possible to raise a child with complex disabilities and not be depressed and anxious.

BLOOM: Sometimes it can be hard to focus on what your child can do because for children with multiple disabilities, there are so many things they can't do.

Dr. Jacob Towery: Right, exactly. And I want to emphasize that there’s nothing that says a person has to change their thoughts or beliefs or focus. The techniques we’ll discuss should only be used if the parent is already feeling accepted and understood by the therapist and is choosing to want to see things differently, which is challenging. If the parent does want to change their thoughts, it can be helpful to write a daily mood log where they write down the thoughts that are making them feel sad or upset or angry. For example: “My child will never be able to accomplish what other children can.”

There's probably a certain amount of sadness that is appropriate and healthy for a parent of a child with multiple challenges. To know your child will have to struggle more than other children do is unfair. Sometimes parents don't give themselves permission to grieve the loss of the healthy child they expected and therapy can provide the space to experience that sadness. But once you have grieved, continuing to tell yourself “My child will never do anything” might be an overgeneralization. Is it really true that your child will never do anything? What if we focus on what the child can do? Perhaps the child can make eye contact now, but didn't used to be able to. Maybe your child can smile and generate a smile in you as a parent. Maybe they can give another person a hug and make that person feel good. It's all about what we focus on. We can focus on the 100,000 things that a child can't do, or on some of the things that they can do, and we will feel differently depending on our focus.

BLOOM: So overgeneralization is one common distortion. What’s another?

Jacob Towery: Let's say a parent has the thought: “My child is worthless because he will never have an independent job and another child is worthwhile because he does have a job.” That's a type of black-and-white thinking. If the parent wants to challenge that thought, we can help them recognize that most things in life fall more into shades of gray and are more nuanced. They aren't one extreme or the other. We could collaborate to come up with a thought like: “Although my child won't have a job and pay taxes like some other children, my child can still make me smile. My child does acts that are kind and generous. My child can give me a kiss and pet an animal. Those things are important and worthwhile. So although my child might have different abilities, it doesn't mean he's worthless.”

BLOOM: There’s a chapter in Dr. Burns book Feeling Good called Dare to be average that looks at how destructive our perfectionistic tendencies can be. But what if my child’s IQ is below average? Do some of the same principles apply?

Dr. Jacob Towery: It’s not the reality of a child having cognitive deficits that leads to suffering, it’s our thoughts that there’s something wrong with that, that intelligence is the only measure of worth, and that because my child is less intelligent he’s worthless. These thoughts can be defeated. One of the techniques we can use is the double-standard technique. People are often much harsher with themselves than they would be if talking to a friend in a similar situation. With the double-standard technique the therapist pretends to be the patient’s best friend – because we often talk to our friends in a more forgiving, consoling and compassionate way. In this technique, the therapist role-plays being a best friend of the patient, but one who has had all of the same life experiences, values and thoughts as the patient.

The therapist might then verbalize some of the patient’s negative thoughts from the daily mood log, pretending to be the patient’s best friend and say something like: “I’m really struggling because my 9-year-old son isn’t as verbal as other kids and I feel the only value that’s important is someone’s cognitive ability. So I feel my child is kind of worthless.”

The patient might then respond as they would to a good friend: “You’re being really hard on yourself. You’re saying intelligence is the only thing that’s valuable. I don’t think that’s true. I don’t know if Mother Teresa had an IQ of 150 or 40, but I know she helped a lot of people in need and was incredibly compassionate. Even though she may not have had a genius IQ she helped the world in profound ways. Then there’s the Dalai Lama. He seems to be a pretty bright guy but I don’t think that’s why people love him universally. He hugs people and speaks in a gentle way and is very generous with his time.

"To say intelligence is the only thing that matters is silly because every person is a composite of many different abilities, values and characteristics. Intelligence is only one part of what makes someone human. What about how generous someone is, how thoughtful they are, how kind they are? Maybe your child is not the greatest at complex problem-solving but he appreciates music or can sing a tune. Maybe he’s not the best at reading but he’s good at giving hugs and is socially tuned-in so that he knows when to make a little joke. That in itself is a form of intelligence."

The therapist might then ask: “Is this really true, or are you just saying that to make me feel better?” And if the parent recognizes that what they’ve said is true, the therapist might follow up by asking whether it’s just true for the “friend” or true for the parent as well. This often leads to a sudden and profound change in mood when the patient realizes that what they’ve said to the “friend” is not only true, but also true for themselves. The double-standard technique gets to the parent’s ability to speak in a more gentle and kind way to themselves.

BLOOM: But our society doesn’t seem to value things like compassion and kindness in people.

Dr. Jacob Towery: We need to accept that some of these things aren’t valued as highly as we would like them to be valued and we wish the world were different. Our children’s gifts aren’t as valued and we can feel a healthy sadness about that. However, if we’re telling ourselves “No one values my child” we can challenge that by going out and asking other people their opinion and sometimes we find out we’re very wrong. I have a cousin who has Down syndrome. Let’s say I had the thought: “The world doesn’t value her because she doesn’t contribute.” I could go out to talk with my aunt and my aunt’s neighbours and I could say: “How do you feel when my cousin comes and visits with you and gives you a hug?” And the neighbour might say “I enjoy living beside her because she’s so sweet and she makes the world a better place.” We can be convinced that no one sees value in our child yet when we go and check this out, we sometimes find our thoughts about what other people think don’t line up with what they actually think.

BLOOM: How can CBT help parents of children who didn’t make the gains they had hoped for? It's a popular idea that if you only work hard enough, anything is possible, and that disabilities can be 'overcome.'

Dr. Jacob Towery: Many of these platitudes are changeable and we can defeat them if they're causing us distress. Let's say I have a child with severe cerebral palsy and I do everything possible and my child still needs a wheelchair. I may have the thought: "If only I had done more, then my child would be able to walk." It can be helpful to examine the evidence in support of, and against, that thought.

Let's start with evidence in support. My child is not currently walking, so maybe that fact suggests that I didn't do enough. Other children are walking, so maybe if I'd done more my child would be like them. Then there have been extraordinary cases where people have pushed and something miraculous happens.

But there's a lot of evidence against the idea. As a parent, I may have spent years of my life getting my child really good rehab and going to heroic efforts and yet he still can't walk. So maybe the thought that I didn't do enough isn't true. There are plenty of other parents who made similar efforts and spent hundreds of thousands of dollars and years of their life on their child's rehab and yet their child still can't walk. It might be that we all suck as parents, or is it more likely that there are some children who just can't walk and even when parents do everything right, they still can't walk? There's no law in the universe that says every child can walk. A lot of this has nothing to do with my ability as a parent. Some children are simply born with certain syndromes or difficulties and they can't walk.

Then as a parent, I could ask myself, "Is the evidence stronger in favour of that thought or against it?” And if the evidence against the thought seems much stronger, it might change how strongly I believe that thought. Then the thought might not bother me anymore or cause distress.

BLOOM: It makes sense to me that we can accomplish a lot by identifying the distortions in our thinking and changing our thoughts. But when the rest of the world seems to be moving in the opposite direction in terms of values, how can we maintain our more positive beliefs?

Dr. Jacob Towery: We all drift in and out of enlightenment – places where we feel confident and settled with our beliefs – and then inevitably our negative thoughts return and we go back to thinking: “It’s unfair, my child isn’t as good as other children, my life should be different now.” This model of therapy can teach parents how to handle those thoughts quickly – so they don’t suffer for days or weeks at a time. Sometimes we need to learn how to accept some truth to the thought we’re having, which allows us to not be as bothered by it. For example, any parent of a child with complex needs is going to have to come to a place of acceptance that their situation is unfair. It is harder for their family than other families and sometimes it may feel like more than they can bear. Whenever we have the idea that something is unfair, it leads to resentment and anger but if we have the thought that something is unfair and that’s just the way it is, there’s nothing I can do to change it, there’s something about that act of acceptance where we’re not struggling against it, not wishing it were different, that causes less suffering and struggling and allows us to empathize with our situation more.

BLOOM: How would you help me change the thought: “I’m a failure because I couldn’t change the outcome for my son?”

Dr. Jacob Towery: Well let’s define terms. How would you define the word failure?

BLOOM: I don’t mean it in the sense that I feel there’s something inherently wrong with me, that I’m a failure as a person. I guess I mean that I didn’t succeed at something I wanted to succeed at that was important for my son.

Dr. Jacob Towery: And how many parents have not succeeded at something that they’ve wanted for their child? I think that applies to every single parent I’ve ever met. I don’t know a person that’s succeeded at everything. It sounds to me like you wished you could overcome the impossible and have the best for your son and that makes complete sense and is not something I would want to change about you.

But how about reframing the thought: “I’m a failure because I didn’t overcome my child’s disability.” Perhaps we could say: “I am a human being because I was not able to overcome my child’s disability.” Or, “I did everything I could for my son but he has such a severe disability that no one could have overcome this.” Or “It would be wonderful if my son hadn’t been born with a disability, but this is the way life is now.” Or “I’m imperfect and there are probably some things I could have done slightly differently with his rehab but every time I made a decision I did what I thought was best.” Or “If I was God, I could have overcome my son's disability.”

BLOOM: What can parents do to nurture the new, more realistic thoughts so that the old destructive ones fade away?

Dr. Jacob Towery: There are several things. One is to write down both the negative and reframed thoughts and rehearse the more positive thoughts several times in the subsequent days. With many of my patients we tape record our sessions, especially as we are going into the double-standard technique, and then have them listen to it again later for homework. By practising a number of the techniques with an experienced TEAM therapist and getting skilled at using them, even if the old thought returns, parents can quickly defeat it.

From Dr. Burns: "Reading Feeling Good might be a useful first step for parents wanting to learn more about how to overcome feelings of depression and anxiety. My Feeling Good Handbook would also be a good choice, as the introduction describes my own intense concerns when my son was born. He had to go to the pediatric intensive care unit due to difficulties breathing. The story brings out the powerful impact of our thoughts – and not events – on how we feel and illustrates how cognitive distortions can interfere with a loving and healing relationship with our children. There are large numbers of cognitive therapists in Canada although there are no certified TEAM therapists (we are just developing our certification)." See Feeling Good Institute for American TEAM therapists or contact Dr. Towery.

More from Ian Brown

Another thought-provoking piece from The Boy in the Moon author Ian Brown in today's Globe and Mail: I'm glad I never had to decide whether my strange, lonely boy ought to exist.

'On his good days, Walker is proof of what the imperfect and the fragile have to offer -- a reminder that there are many ways to be human, and that judgment is our least valuable human capacity.'


Stu!

Our car broke down on the way to the store yesterday. I managed to limp it to a shopping complex but it didn't even make it all the way into the parking lot. I stopped the car, and opened Georgie's door for some air, since it was the farthest from the street.

Georgie looked out the door and said, "Hummm... Stu. Stu." [stuck. stuck]

Yup, we were stuck!

Overheard: Bear edition

This morning I was holding Cole up to the mirror, pointing at him and then me. I pointed to him and said, "Who's that?"

He said, "BEAR!"

I said, "Who are you?"

"BEAR!"

Baby Bear's Chocolate Chip Cookies

(published in The Family Dinner as "Nana's Happy Chocolate Chip Cookies")



Cole and I made cookies together for the first time yesterday.Adam isn't a fan of "thick" chocolate chip cookies so he asked me to find a "thin and crispy" cookie recipe. I'm all for experimenting with cookies!

Preheat the oven to 350.

In a small bowl, mix:

12 ounces of good quality chocolate, chopped

2.5 cups of all purpose flour
1/2 teaspoon baking soda
1 teaspoon salt

Set aside

In the bowl of your mixer, mix:

1.5 cups (3 sticks) of butter, room temp. (I chopped the butter up to make it easier to add and mix)
1 cup white sugar
1 cup brown sugar

Mix until smooth and creamy. Next, vigourusly add

2 eggs

until well combined. Slowly mix in the chocolate mixture. Chill for 30 minutes.

When chilled, drop small balls onto a cookies sheet. They spread, so leave  a good amount of space between each cookie. Bake at 350 for 8-12 minutes. When done, cool on the cookie sheet for 5-10 minutes before moving to a baking rack. Allowing them to cool makes them eaiser to transfer and reduces the risk of broken cookies.

Homemade pesto sauce

(from The family Dinner by Laurie David)

1/4 cup pine nuts or almonds, toasted
2 cloves garlic
1/2 cup grated parmesan cheese
2 cups lightly packed basil leaves
2/3 cup EVOO

In a food processor or blender, pluse the pine nuts or almonds with the garlic and parm until finely chopped.

Add basil and pulse until minced, scraping the edge of the bowl as needed.

With the machine on, add the EVOO in a thin stream until smooth. Season with salt and pepper as desired.

This is great with whole wheat pasta. I freeze it in half cup servings (plastic bags, flat in the freezer) and pull out for a quick dinner.

Hi. I'm Happy.

Today I felt panicky about the upcoming school year and our plans to change Ben's school. We haven't been able to do a lot of preparation because staff have been off all summer and only come back next week. Ben and I will visit for the first time on Tuesday and school starts the following week.

I went outside to take a walk around Spiral Garden -- the outdoors camp run by practising artists at Holland Bloorview. It was empty, having finished yesterday, but the children's creativity was on full display.

I came upon a huge mound of earth that had been fashioned into a face. There was one eyelid in the centre of the face through which flowers were peeping, a long, pointed cloth nose that had been carefully stitched, and white and yellow wooden teeth pressed into a mouth. New shoots of grass were beginning to sprout out of the mound. Beside the creature was a bright green sign on which had been painted: "Hi. I'm happy."

It seemed like Ben was talking to me, because that is exactly how he sees himself. Despite his many challenges, he is happy and he wants others to know that he's happy. That made me think that whether the new school situation works out is irrelevant -- as long as Ben stays happy. If it works -- great. If it doesn't, we will find something else that works. As long as Ben is happy, that is all that matters.

transition meeting

Our first meeting to transition George from IT to the school district went well. Awesome. Damn near PERFECT!

REALLY!

We met with the social worker and our FSC. We were all on the same page. They discussed Georgie's needs and were pleased that I had written down every one of the 25 words/sounds he has and the random phrases he has said once. We talked about the possiblity that he has some anxiety issues, his eval at the local hospital, his hearing and of course, his speech.

In the end, they told me that in Oct, he will start going to the preschool 4 times a week. For about a month, they will evaluate him and then, close to his third birthday, we will all sit and write his IEP. For George, he will just keep going to school like always. For the rest of us, the writing and signing of his IEP marks the transition from IT to the school district.

In the past few days, I have written his name, phone number and address more times than I can count. I have piles of paperwork to take to the dr (for his and horse therapy) and a check list of documents I need to get. I need to work on helping George understand what is going on, drinking enough to keep me sane (I'm slightly kidding... but more on mommy guilt later) and figuring out who goes where and when.

This is the best thing for him, although it is the end of an era for the rest of us. I pray he thrives and makes buddies in school.

Fine

I don't know how they begin, the conversations about prematurity. Sometimes it's with a simple birth story or the knowledge that the person I am talking to has a NICU baby. But somehow it comes up that Georgie was a preemie.

"But, he's fine now, right?" they ask hopefully.

Hope.

They want me to brush it off, to say, "Pish, of course he's fine! Five weeks early is nothing!" But I can't.

Five weeks early is nothing... compared to six, eight, ten, fifteen weeks early. It's nothing compared to months on a vent, PICC lines, NEC and infections. It's nothing compared to what could be.

But saying it is nothing negates what we all went through. Maybe it is nothing compared to you, your friend, your neighbor... but my son is not you, and he is not someone else's kid. He is my baby and what we go through every day is certainly not nothing.

Yes, Georgie can walk. He can run, he can jump, he can see, he can hear, he can... oh, wait, he can't talk.

Ah, see, there's the rub. Georgie cannot speak and that is not nothing. It is not fine.

It's not something to wait and see if he grows out of. Every day, he grows, his understanding of the world grows and he is fustrated. He's non-verbal, not dumb and he knows everyone but he him can talk. He knows I spend most of my days guessing as to what he wants. He knows I get upset, annoyed (sadly) and angry (but not at him). He knows he's different, he knows the words are there and he can't get them out.

I know when people ask if he's fine they want the chirpy yes, the answer that means we can change the coversation. I won't lie. I can't.

My son is wonderful.

He is unquie.

He is silly, funny, happy, healthy, whole, a toddler, strong willed, stubborn and a delight. He is perfect in the way that every human being is perfect. But is he fine?

No.

Homeward Bound, Moose!

Whew!

(Click here for a quick recap of what happened with my sister, her husband and their new son, Moose.)

Tuesday, I called my mother for a quick update on Moose. When she saw my name on the caller ID, she just launched into the story of what was going on. At that point, he had just been taken off oxygen and was being fed. They still had not heard back about the blood cultures as to whether or not their was an infection present, so it was alot of the typical "hurry up and wait."

After Mom finished her update, we chatted a bit and I waited... and waited... finally she said something like, "Do you have anything special going on today?"

"Um, well, since it is MY BIRTHDAY..."

Yes, my OWN MOTHER forgot HER FIRST CHILD'S thirty second BIRTHDAY. THANK YOU MOM!

Oh the guilt! Oy, the grief I heaped upon her as we laughed. She did send me my card and pressie right on time but the fact that she FORGOT MY BIRTHDAY... My sister even called me from the hospital (you know, the sister who is recovering from MAJOR SURGERY and dealing with a NICU BABY) to wish me a happy birthday and my brother WHO DOESN'T REMEMBER ANYTHING called me... BUT MY OWN MOTHER...

She OWES me a pie! Ha!

Okay, so back to Moose...

Wendsday morning, there was trouble in Rivercity, people. The blood work had come back the night before but the resident said he was unable to give them the results.Then Moose blew his IV and they couldn't get a new line, so they ran an umblical line. They told my sister she would be unable to hold or breastfeed him for 24 hours but that my BIL could hold him and give him a bottle.

I drew from my own experiences and my wise network of NICU moms and told my parents that Moose could not be held because the lines go into arteries and he runs the risk of bleeding out if they were moved or juggled in the wrong way. The "no holding" thing was normal BUT if he was too unstable to nurse, then he shouldn't be held to bottle feed either. I suggested they nG all his feedings and give him a binky to suck on for comfort. If he could be held to be bottle fed, then she should carefully nurse, perhaps in the football hold to avoid jiggling, touching or otherwise messing with the umblical lines. I also suggested that they try his head for an IV- something that totally squicks me out but is safe for holding, nursing and bonding.

Because they felt like they were being given the run around, I suggested they contact an LC to discuss the feeding issue and the patient advocate for help in working with the medical staff.

(I told my dad this in the morning and when he called me in the afternoon, he said in an amazed voice, "You know, Laura, you were right!" To quote Harry Potter, "Always the tone of surprise.")

My mom took my oldest nephew up to visit my sister and when they left, my sister called me. Things were even more fun than I had thought. Because Moose is, well, a moose, they started him on a sugar IV right away. Did they see if he could maintain his blood sugar on his own? Of course not. Big baby + breathing problems always equals blood sugar issues, right? NOT.  Now, of course, big baby + breathing problems should equal careful and close monitoring of blood sugar levels and appreate intervention as needed... yes, I know it is a drop in the bucket but it was one more annoying thing for them to deal with.

Because my sister had a fever in labor, they did not want to give Moose her milk. Niether of us can figure out why. They were worried about an infection passing from her to Moose via her milk but, like she said, if Moose was getting sick, then he needed the antibodies from her milk. And how can you pass a uterine infection (their fear) onto a baby through breastmilk? She wasn't allowed in the NICU for a day because she was running a small fever... but her husband who had an obvious head cold was allowed in, as long as he wore a mask. Doesn't make sense to me! Again, these are small things in the grand sceme of life but when these little straws add up, they can break a camel's back.

That night, the NICU recieved four critically ill babies. As the nurses rushed to help those children, they told my sister Moose was off abx and just needed his umblical line pulled. It was pulled around 2:30 this afternoon. They are being very careful and having Moose see his ped tomorrow.

BUT. After all this- all this worry, this stress, this headache- he is going home four days after birth, the normal amount of time spent in the hospital for a c-section baby. His parents never had to leave him in the hospital and my sister will be discharged WITH her son.

When things looked bad, when he went to the NICU and stayed there, when they told us he had fluid in his lungs and then the umblical line put in, I put Moose on every prayer list I knew of. I posted his name to my NICU mama friends and got advice. I asked my kids godparents to pray for him and asked the non-religious family members to send good vibes, do a naked rain dance or whatever. To those of you who prayed, thank  you. To those of you who did a naked rain dance or sent good vibes, thank you. To those of you who lit a candle, thank you.

Jesus, thank you.

Moose is home.

Public school and the Natural Parent

Want to know how and why we picked the public school system for our children when many of our friends hoemschool or use Catholic schools?

It's on NPN of course!

Welcoming a New Baby

Having brought four children into our family, and being the oldest of three, I know a little something about adjusting a sibling to their new brother or sister! However, I don't know everything so please pop over to The Natural Parents Network, read my article and leave your own tips!

Welcoming a New Baby went live on my birthday!

ACC & Moms-To-Be Story #11



I am very thankful to all of the Moms who want to tell
their story about being pregnant and having a baby with
Agenesis of the Corpus Callosum.

Each story is as unique as each child who has ACC.

Tracy, Mom of Jose, read one of the ACC Pregnancy Stories
on this blog, written by another mom, and she posted a
comment on the other mom's story. In Tracy's kind
comment she also expressed a desire to share her own
ACC Pregnancy Story here for others to read.

I got in touch with Tracy through e-mail and am
absolutely thrilled and very grateful to be able to
include Tracy's ACC Pregnancy Story here.

Thank you very much, Tracy. It is a privilege to
be able to share your story here on the blog. I
thank you from my heart for your desire to help
other people (and new parents-or parents-to-be)
through sharing your own personal ACC pregnancy
experience and story.


Written by Tracy:


Jose's Story

Our story begins during my awful pregnancy. I say awful, because that is exactly what it was. I gained 120 pounds. with our son, was in constant pain, had sciatica to the point where I could not walk for two months, had false labor a few times, a cyst bigger than a golf ball, and that is just the tip of the iceberg. When I was around 20 weeks pregnant I was seeing a high risk doctor due to all of my complications. When doing the ultra sound he informed my fiancĂ© and I that he was concerned that our son’s (yes, he was now officially a boy) nerves in his brain were not developing as quickly as he would like, and he was concerned our child may have Down Syndrome. My heart dropped. The next 12 weeks felt like an eternity. All I did was pray and research. At 32 weeks, he informed us that he could not see the Corpus Callosum and our son was so stubborn he refused to move, even after the doctor tried to move him! We returned home, said more prayers and did more research. I was set to be induced at 34 weeks due to my placenta showing signs of starting to deteriorate. I went to the hospital 3 cm dilated and at positive 2. After two days of Pitocin and Cervidil, I was still only 3 cm, and my son was now up in my rib cage. I had to have an emergency C-section.

My son arrived on June 28, 2008, at almost 9pm! He had all his fingers and toes, was healthy as an ox, weighed in at
7 lbs 1 oz., and almost had perfect Apgar scores! I wasn’t sure if my son was different, but to me he was perfect.


Jose at 1 week old

When he was around 6 weeks old, he went for an MRI at the Children’s Hospital. It was confirmed that my son has Complete Agenesis of the Corpus Callosum. I was still unsure of what this meant for us. I did the research, but there was no hard evidence, just the whole wait and see that we still get to this day! What I did know was, I had a plan. I was determined to stick to my plan at all cost. Something inside of me told me what to do. Call it divine intervention or mother’s intuition, I had already put my plan into action, and now I knew I could never stop. We went home, and needless to say I broke down. There is no way to sugar coat it, it is the worst news any mother can ever get. I cried, I blamed myself and then got up the strength to suck it up and do what I knew I had to do.

Jose at 4 weeks old

What was my plan exactly? The main focus was treating him like a normal child, with a few exceptions. I knew he would need to be comforted a little bit more, and need extra attention. This is why my fiancĂ© and I decided that I would now be a stay at home mom. While the income would be tight, we knew our son needed the one on one care. I only gave our son Enfamil Lipil formula, because the DHA and ARA content more than doubled that of its competitors. I knew that DHA helped aide in brain development, and was dead set on it. I read to my son every night, so much so that we could read 3 full length Disney books and he would keep his focus. Call me crazy, but I also started flash cards with him the day he came home from the hospital. Letters, numbers, shapes, and colors. My philosophy was if he needed extra time to learn, I was going to reinforce it as much as possible. I didn’t sing the typical lullabies either. I sang the alphabet, and a made up song of me counting one to one hundred. This was my son, and since there was such little information out there, I decided to go with my gut!

Around 6 weeks, my gut told me that there was something wrong with my son’s feet. I took him to 3 different doctors, and they all assured me he had a good range of motion and I shouldn’t worry. So I didn’t. My son also seemed to sleep a lot. He slept through the night from the day that he was born, and most of the day. As a new mother, I just assumed that babies needed their sleep. Turned out, it was just him needing sleep. He did however; give me his first smile at 6 weeks old. I was cleaning the house, and walked into the bedroom. I will never forget how his face lit up and this amazing smile filled his face! It filled my heart with so much joy, as it was the first sign that my baby boy knew who I was.

At 3 months old my son was starting to sit up on his own, but he would fall over a lot. By 6 months old, he weighed 30lbs, and didn’t do much of anything. The doctors were baffled that he was only eating 24 ounces of formula a day, because he was so big. They even had us admitted to the hospital so they could monitor how much he was eating. Low and behold, they discovered I was telling the truth, and didn’t find anything else wrong with him. At 6 months he did bless us with his first word, Dada! He also learned to roll from his belly to his back!

Jose at 6 months old

By 9 months old, it became clear that my son was different. I saw other babies his age walking, or about to walk, but he couldn’t do much of anything. He could say Mama, Dada, Baba, and Bobo (the Spanish word for pacifier). We applied to the Early Intervention program in our state, and it was the best decision we ever made. He qualified for PT (Physical Therapy), OT (Occupational Therapy), and Speech Therapy. They showed us many things that we could do to help our son.

Jose at 1 years old on his 1st Birthday

When our son turned a year old, the pediatrician told us he would most likely be a vegetable for the rest of his life. My initial response was devastation. Once again I sucked it up, because we refused to accept it. We put more focus on him and everything in his life became a form of therapy. Our son must have heard this because within the week, he could finger feed himself and said two additional words! He also stopped using his bottle and pacifier. We also let him sleep in a toddler bed, in which he learned to push himself off of, and he never once fell off!

Jose at 18 months old

By 18 months old my son could army crawl and roll over. By 2 he could crawl.


Jose crawling on mat
Note: faces of other kids covered for privacy

By 2 ½ he could walk unassisted for a short distance in his walker.

Jose using his walker
Note: faces of other people covered for privacy

It was also like a switch in his brain flipped! It seemed as if he just woke up and started telling us things. He could spell his name, name all of the animals and their noises, knew all of his shapes, colors, and alphabet! He was also diagnosed with spastic diplegic cerebral palsy and 5 % tibial torsion.

Our son is now three years old and amazes his doctors with his intelligence. He currently weighs 55 lbs and is still getting up on his feet and using a walker! The weight issue baffles them, as well as the whole issue with only from his knees down turning in. We do Botox injections and oral Baclofen, but they barely aid with his spasticity. We are currently trying to convince his neurosurgeon to give our son a Selective Dorsal Rhizotomy and then we want to proceed with an orthopedic surgery to correct any in-toeing that is left over. We then believe that he will walk without any assistance. He is the most laid back loving child that anyone ever meets. He is filled with hugs and kisses almost all day long!






My greatest advice to anyone just getting the diagnosis, is to not give up on your child when the doctors think that things are impossible. Children with this condition are capable of so much more than anyone could possibly imagine. We are fortunate to have another family in our life with a little girl one year older than our son with the same diagnoses. They are very similar to each other in terms of reaching milestones, with the exception that she started talking earlier and she is a lot more vocal! They both seem to show advanced intelligence levels! (She also started DHA from birth) So please, look at my son as a story of inspiration. He has gone from the doctors telling us he would never be anything more than a vegetable to having advanced cognitive function, and the biggest issue seems to be the nervous system issues with the C.P. (Cerebral Palsy). However, he gets around well with his walker, and with today’s surgical technique he will most likely walk by the time he enters kindergarten!

Jose


There are many different stories and outcomes of ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.


I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Sneaky Little...

Last night, I was really worried about my sister. She was having a long labor and my parents had not heard anything all day. Right after I posted that entery, she called me, telling me her new son (who I will call Moose on the blog) was born arounf 8:30 last night. He's a BIG little dude, almost eleven pounds!

Unfortunatly, Moose was in the NICU because he was having trouble breathing. I spoke to a good friend, a VBAC mom herself and mother to a Giant Monster Baby, who said trouble breathing was normal for big babies and c/s babies, which I knew. I told myself Moose was just having trouble transitioning after a long labor.

We were busy today and had a meeting with our SLP at Bass Pro Shop, a place Georgie loves. I couldn't get Moose off my mind, partially because I was worried and because I kept having a vision of this (not so) little baby hooked up to a ventilator. In my mind's eye, I saw Georgie as I first saw him in the NICU- sprawled out with tubes and wires and beeping monitors. Then it would flip to Moose. I kept trying to take that tube out of the "Moose in my mind's eye." Didn't work.

I finally called my mother around noon. Getting a straight answer from anyone in this family is like pulling teeth. Pulling INFECTED teeth. PAINFUL. The short story is that he was on either a high pressure nasal cannuala OR an osolatting vent OR the "space helment."


For the record, this is a normal vent.



That there is the nasal cannula.

This is a bad picture of the space helment.

Can you see the difference? This is why I am confused! There's a difference in each one of these and a difference in the levels of care and how sick he would be. People! If you have a kid in the hospital, no matter how short of a time, get a blog! Use CaringBridge! Don't play "pass the telephone" with information!

My parents have WCN, my sister's oldest son, until my sister is released from the hospital.

The rest of the day was brought to you buy a healthy, sneaky dose of PTSD.

I think I could handle the knowledge of Moose being in the NICU if we weren't transitioning Georgie out of Infant and Toddler services and into the school district this week. When I spoke to our family service coordinator last week, she indicated that George might not go to the full preschool program. Rather, he might just go up to the school a couple times a week for speech therapy, not for the full preschool program. This didn't jive with what she told me at our sixth month appointment. Then she said that he would qualify for the preschool program, no problem.

I'm easily confused. Don't confuse me. Plus, I had been looking forward to mornings with just my little dudes and I had to make the mental adjustment to my boy going to school a year before he's supposed to. I had made the adjustment and while I am sad for me, I know he will LOVE preschool. He stood at the enterence to the preschool and kindergarten wing and cried! Yeah, he wants to go!

Our SLP said that it is likely that the FSC can't confirm or deny anything until all the testing is done. I get that. I've just never done public preschool before, never had to mess with an IEP for one of my children, never done a preschool IEP and... I feel guilty.

See, every time I walk by that classroom, I think how much Georgie is going to LOVE it. And he is. I know in my heart that this is the right thing for him.I just think, though, that if my water hadn't broken, if something hadn't gone wrong, my baby would be fine.

I also believe, down in my soul, that Georgie is perfect.He is exactly the way God wants him to be and he has apraxia for a reason. I believe he will do wonderful things and teach us so, so much. He already has.

But I still feel that guilt. I still see hints of that helpless baby in his face, that baby that couldn't breathe on his own. I turn around and it's there, that sneaky little vision of what is still the darkest moment of our life.

I could handle one or the other, alone, each on its own time but Moose in the NICU and the transition meeting BECAUSE of another NICU stay has me on my knees. I feel like it's raining and I'm powerless to stop the flood.

Maybe it is raining and it's the memories that are drowning me.

'I don't want any parent to feel alone'

















Kate Robson is parent co-ordinator for the Newborn Intensive-Care Unit at Sunnybrook Health Sciences Centre. The new 41-bed unit – which opened last year – cares for babies born before 28 weeks as well as newborns with other medical issues. Kate’s ties to Sunnybrook go back six years when her daughter Maggie was born at 25 weeks (photo above) and was an inpatient for over five months. Her position in the unit as a parent supporting families is a new one. Thank you to Frank Gavin, former chair of the Canadian Family Advisory Network, for letting me know about Kate! Louise

'I don't want any parent to feel alone'

BLOOM: Describe your role.

Kate Robson: My main priority is to work with families and be there for them as a support – and what that looks like depends on the family and what they need. For some families I’m someone they can talk to and bounce ideas off. I help other families navigate the system and connect them to resources in our hospital and elsewhere. I do a lot of visiting, walking the floor and have regular events to connect the parents. Every Thursday is a standing invitation at 1:30 and I bring treats and it may be social or we may bring in a speaker. We try to give people an opportunity to celebrate because there are lots of reasons to celebrate. Because our families have single room units, it’s even more important that I connect them so they don’t become isolated.

BLOOM: What are the greatest challenges for parents?

Kate Robson: Uncertainty. Before my daughter was born, I assumed there were more black and white answers when it came to diagnosis and predicting the future. Learning to live with the gray areas is difficult for every family. For many, everything was going lovely with their pregnancy and then they suddenly descended into this medical abyss. So it’s very surreal. There are feelings of isolation – that your experience is different from what you expected and from what everyone else around you is going through. For families who are here a long time, it’s hard to manage on a practical level – being away from home, and with all of our rules and regulations in terms of infection control. This experience changes you. It changes the way you look at the world and your perceptions of control and safety.

BLOOM: What was your experience of having a baby who needed to be in the NICU?

Kate Robson: Maggie was born at 25 weeks at 500 grams – the same weight as a block of butter. Everything was fine and then my blood pressure skyrocketed and they realized that a problem with the placenta was preventing Maggie from growing. I had a c-section and she had a very rocky first three weeks of life: there were many suspected problems and she had to have a surgical procedure on her heart. All the drama of ‘is she going to make it?’ was front-loaded in the first month.

BLOOM: I sat in an NICU waiting room once and listened to parents talk about how they were being pressured to withdraw care from their baby because the probability of disabilities like cerebral palsy was high. One mom said: “I know my son may have CP, but he’s my son!” I wondered how much personal experience with disability the NICU physicians had. Was withdrawing care ever suggested as an option for Maggie?

Kate Robson: No. I think the idea of informed decision-making is a lot more complicated than we thought. Once a parent has asserted his or her decision, then we need to create a judgment-free zone and our job is not to question the value of the child’s existence or the value of the parent’s decision. We need to put that child on the path to the best life possible. Because people who work in the NICU are used to trauma, it can limit our world view. We’ve seen the worst of the worst and it may colour our perceptions. We need to support people to make their own choices. That’s where I love families coming back to us and sharing their experience and ideas on how we can improve.

BLOOM: Tell us a bit more about your stay in the NICU.

Kate Robson: The first two months were focused on survival and stability. They were great about helping us hold Maggie and do ‘kangaroo care.’ This is holding your baby skin to skin against your heart. It’s the closest you can get to having them back in the womb. Your body will regulate their temperature and there are all kinds of benefits in terms of growth and brain development. Each room has a kangaroo care chair – which is easy to get in and out of and makes it comfortable to hold your baby, especially with a ventilator – for hours at a time. You start with your baby in an incubator with lots of stuff - ventilators and things to hold IVs - and as they grow the stuff goes away and the machines get smaller. It becomes easier for parents to play a role (although our involvement is encouraged from the start). The baby moves from being tube-fed to being breast- or bottle-fed.

BLOOM: Does Maggie have any disabilities?

Kate Robson: No, she doesn’t. She’s going into Grade 1 and seems to be doing fine. Babies who are very small for gestational age tend to be a bit smaller and what’s difficult now is watching her deal with comments and questions about her size. She’s had some experiences with bullying. As a parent, I still find it very anxiety-producing to go into a new clinical space and have her assessed. I’m always waiting for everything to go wrong.

BLOOM: Do you think it’s hard for parents in the NICU whose children have been diagnosed with disabilities to share with you, knowing your child doesn’t have long-term issues?

Kate Robson: We’re very fortunate and in many ways Maggie has been an easy kid. That’s not what always happens. But I don’t think other parents would trade their kid for mine. Sometimes I have a bit of almost survivor’s guilt, thinking ‘Am I the person they want to talk to?’ But I’m only one person. I have one story and I can’t be the answer for everyone. We have a lot of very gifted parents we can connect people with through our follow-up clinic. It’s so important to connect parents.

BLOOM: What do you hope to achieve through your role?
Kate Robson: My main goal is that I don’t want any parent to feel alone – whether in those early days or 10 years down the road.

BLOOM: In what ways could Sunnybrook’s NICU improve?

Kate Robson: I think in peer mentorship, in early education with families, and in really strengthening the relationship between caregivers and families, although I think we have a strong base there. I’m one parent voice, but I’d like to bring more and more families in and engage them and ensure there are diverse parent voices.

BLOOM: When you hear from graduate families, what do they want you to focus on?

Kate Robson: They want the experience of care to be the same, even if they can’t always have the same caregivers. They don’t want people telling them different things all the time. I think we have to find creative ways to help families feel like they have choices. They’re in a situation where a lot of choice has been taken away and we can’t fix that. So when it’s possible to make choices, we have to give them the opportunity and honour those choices. I think we also have to do more to support families who are transitioning home. That’s how I felt and that’s the feedback we get from families. I think peer support could be a cost-effective way to help and a lot of times the best help comes from people who’ve been where you’ve been.

'Deselecting' our children

An important piece in the Globe and Mail today:

'Deselecting' our children

Here’s a recent Danish headline: “Plans to make Denmark a Down syndrome-free perfect society...”

Praise!

He's here, healthy and huge!

Playing the Waiting Game

Maybe baby?

No, not me. At all, in any way! My sister is pregnant and WAS due Monday, the fifteenth. Today is not Monday, or the fifteenth nor is their a baby in their arms. (That I know of.) See, while I have a microwave (cooks 'em fast and not always healthy) she has a slow cooker (looong and apparently slow.) She's been in on and off labor for awhile.

I went to Mass this morning and between the full childcare, me having to do childcare at 10:30 and pacing the halls with a toddler who refused to be put down, refused to let me sit down and was trying to crack his head open on the marble floor... there was alot of offering up going on. After Mass, I lit a candle at the St. Gianna Molla statue:

and prayed and hoped for a healthy mom and baby and a smooth and safe delivery.

When Somebody Loved Me















I know I mentioned that Ben loves Jessie, the cowgirl from Toy Story.

If left to his own devices, he'll surf the internet to listen to her soulful song, When Somebody Loved Me, over and over and over again.

We may hear it in English, or Spanish or Portuguese.

He will proclaim his love for Jessie (I love Jessie, he'll sign).

Why was Ben so drawn to this song, I wondered. But listening to the lyrics, I think it's somewhat of  a metaphor for Ben's life.


When somebody loved me,
Everything was beautiful
Every hour we spent together lives within my heart
And when she was sad,
I was there to dry her tears
And when she was happy,
So was I
When she loved me

...
So the years went by
I stayed the same
But she began to drift away
I was left alone
Still I waited for the day
When she'd say I will always love you

Lonely and forgotten...



I wonder if, like Jessie in the song, Ben feels the ache of staying largely 'the same,' while everyone around him grows up and drifts away.

He had friends at the elementary school he went to. But they've all progressed at an amazing pace and he wasn't able to keep up.

If only Ben could live in a world where the rules were simpler and no one got left behind.

Learning Tools & Ideas #2


Agenesis Corpus Callosum
Parent Teaching Tip:

Parent of 6-year-old child with ACC and hydrocephalus, says:

"When our son was non-verbal we used the Signing Time
videos to teach him sign language. He was already
infatuated with music so the videos held his attention."



Note: check your local library to borrow Signing Time videos.


"We also used the multi colored foam letters and numbers as
a bath tub toy. By the time he started Pre-Kindergarten, he
could count to 20 and knew all of his letters and colors."




UPDATE!
Re: Little Tikes Bath Letters and Numbers


Please be advised that testing in 2008 by HealthyStuff.org shows that they are toxic and contain high levels of mercury.



Thank you very much to the parent of the 6-year-old child
for your great ideas!


I have to say that I also use Signing Time videos with my
child, Matthew, who has ACC, and we love them! I borrowed two of the Baby Signing Time videos from the library so I could try them with Matthew. He really liked them. Then I borrowed several of the "Signing Time" videos. We liked them so much that we purchased some of his favorites!

Signing Time - read my personal blog post review

Other Sign Language resources
(we also use) are:

Baby Einstein My First Signs-See and Sign with Baby

Baby See 'N Sign (Volumes I and II)

My Smart Hands

The bath letters and numbers, the parent mentioned,
provides visual and (hands-on-touching) sensory input
for a child, allowing a multi-sensory learning experience.

Many kids with Agenesis of the Corpus Callosum learn
best through the use of multi-sensory teaching methods.
In other words, when they are learning something they
benefit from receiving input to 2 or more of their 5
senses: (See, Hear, Taste, Smell and Touch)


Thank you so much to the parent of a 6 year old child with ACC for your great ideas!

Have a learning tool that YOU want to share on the ACC blog?

Tell me all about it. I'd love to hear from you and so
would a lot of other people, too, who will be able to
see and read all about the learning tools and ideas
that you use with your child who has Agenesis of the
Corpus Callosum.

It is my hope that this section will become an expansive
collection of numerous learning tools (for families to
browse, see and read about) that will offer a variety of
new and inspiring ideas to help their young child, teenager
or grown child in many different areas--from academics, to
fine motor/large motor skills, to sensory issues, to
potty training--and anything else that comes to mind.

Do you have something that you would like to add?



Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau, where she shares some excellent ideas and fun "Learning Tools".

The IEP Process: Part 2


The IEP Process: Part 1 (Don't miss the previous post on IEPs)


The first thing I did when we were moving was contact the school district and ask to speak with the special education director. I was fearful of the process once more but felt better prepared.

I spent over an hour talking to the special education teacher and I was impressed that she had given me that much time since I was not even a resident of the school district yet. I had so many questions and she answered every single one of them. When I did not understand, she would back up to make sure I was following along. When I was writing notes for reference, she was making sure I had the correct information. In addition, when I called a second time with more questions, she still had time to help me navigate and understand the process fully and what our options could be and what evaluations would be needed.

Once we moved and I got the girls enrolled in school, the team came together and we began the process of an IEP and getting the girls ready for school.

The first thing they did was gather information about our family and the girls individually. There were parent interviews, questionnaires, and dialog. I was encouraged to share my fears, my expectations, and goals I had for each girl.

I was impressed with the evaluations and the therapists. These women could be working doing private therapy because they are that good! It was especially reassuring to find out that the physical therapist has an adult daughter with Down syndrome. Now how neat is that!

Once again, the special education teacher took time to talk through the different placement options for Nina. I asked more questions and she also asked me good questions that got me thinking. Tracy, you will never know how much I value and appreciate all the time that you were willing to give to our family. It made all the difference!

After evaluations were completed, an IEP meeting was set. I asked for the draft before the meeting so I could go through it and know what we would be talking about and discussing. They had those to me as promised.

I feel it is important to make a side note here. Some may wonder why it is so hard for parents to deal with IEPs, especially when they are meant to help their child. But this is why, (at least from my personal experience while reading Nichole's drafts). An IEP focuses on the child’s weaknesses and as a parent, it is overwhelming to see all of your child’s weaknesses wrapped up together with all the positives and strengths left out. Emotionally, it is tough, really tough. Having the draft before the meeting helps a lot! You can read it, deal with it, and remind yourself what the goal of an IEP is: to help your child in their weaknesses. Then you take a deep breath, remind yourself of what an incredible child you have, how many strengths they have, and you are ready to get the ball rolling and plan an IEP.

A good team will make sure to bring up the strengths of the child at a meeting, because they will know it is important for the parent to hear that too. Once again I will say, the reason it is not written as part of the IEP is because if it is a strength, help and intervention are not needed.

Before the IEP meeting I sat down and wrote down a list of goals I wanted for Nina and Nichole to work towards in the following year. I included speech, gross motor (physical therapy), fine motor (occupational therapy) social, emotional, and developmental goals. For Nichole, I also wanted to make sure it was written in her IEP that she is a rascal has a tendency to wander and therefore is imperative that she is not able to get out of her classroom or be outside without constant supervision.

The morning of the IEP meeting, we were ready with coffee, donuts, and feeling excited to talk about what the school year would look like for our girls. While the IEP meetings are quite formal, all the therapists and teachers were very gracious, friendly, and we were all working together to develop a plan that would help Nina and Nichole reach their fullest potential.

When we got to the goals, I was encouraged that the goals I had written were almost the same goals they had. That is what you call being on the same page!

Once we were done, we were excited not only about the school year, but about the team! I do not take this for granted. I am incredibly thankful for these wonderful people that loved our girls and saw their beauty and potential. Incredibly thankful.

And to all those parents out there, I highly recommend the book, "Wright’s Law: From Emotions to Advocacy." A must read if you ever have to sit through and IEP.