The 'perfect' holiday: make it a family tradition

By Lori Beesley
Holland Bloorview family leader

At this time of the year, other children are putting pencils and crayons to paper, writing their letters to Santa. Our son is getting excited about Christmas too, but he has his own reasons. For Mitchell, it’s all about the anticipation of the day rather than the reality.

Mitchell has a genetic condition called Fragile X syndrome as well as autism. Because he has Fragile X, he is developmentally delayed and is unable to write a letter to Santa, or anyone else. So why is he excited about Christmas?

The idea of having everyone in the family over for the day makes him happy. As soon as the lights and decorations start to appear, Mitchell knows Christmas is coming. He’ll pretend to call family members on the phone, inviting them to come over for Christmas and spend the day together.

The other night I told him that my brother was sleeping over on Christmas Eve. He was very excited. He immediately picked up the phone and had a good five-minute 'pretend' conversation with his Uncle Terry, telling him to make sure he brings his toothbrush and pajamas when he packs for Christmas Eve. There was no mention of gifts or presents, since those are secondary for Mitchell. The joy of spending time with the people closest to him is what makes Mitchell’s day special.

That said, Christmas time can pose its own unique challenges for us as a family. Mitchell can become overwhelmed if visitors to our home aren’t those he was hoping for, or if there are too many.

We recently hosted five couples for dinner and minutes before they arrived, Mitchell got very upset, leaned his back against our locked front door and kept repeating: “No one in my house.” He recently turned 18 and is taller and stronger than me, so simply picking him up and removing him is no longer an option. Lots of distractions and a promise of a special treat of watching TV in Mom and Dad’s room helped resolve the situation.

Going to other peoples’ homes usually proves more successful, but we need to do lots of prep work to make this pleasurable for everyone. We prepare Mitchell by telling him what to expect and who will be there. We bring along his Nintendo DS and our iPad and make sure both are fully charged. Within minutes of arriving, Mitchell has usually scouted out a quiet room or corner and stays put for the remainder of the visit. At some point, his internal “It’s time to go home NOW” switch is thrown and we need to be ready to move pronto. On a positive note, his ability to tolerate longer evenings out has increased over the years so there is hope!

Another issue we face is managing our family’s expectations of the holidays. It’s our job as parents to try to make sure our children enjoy this special time of year. But to do that, we need to know what a great time looks like for our particular child, given their unique abilities and sensitivities, and balance that with our family’s expectations.

Years ago, we used to celebrate Christmas at my brother-in-law’s home. It was a loud, boisterous home with everyone talking over each other. It was the exact opposite of the environment Mitchell was most happy and comfortable in. When it came time to open gifts, my sister-in-law wanted everyone to be in the same room, taking turns, eating and laughing together.

But I knew better.

I quietly led Mitchell into another room, popped in a new movie he had received that morning at home (a yearly tradition) and set him up with a snack and drink. He was in his element and had a grin from ear to ear. My sister-in-law however, was not happy.

She was upset that her idea of the perfect family opening gifts together wasn't happening.

“But we should all be together," she said. “That’s the way it’s supposed to be.” She felt badly that Michell was all alone. Mitchell must be with us, she insisted. I had to tell her, in no uncertain terms, that Mitchell was not joining us. It was frustrating to have to explain to her why Mitchell was happier alone in a quiet room, watching his movie, and to convince her that this really was best for Mitchell and for everyone. However, as educating extended family is an annual occurrence, it does get easier as the years go by.

While your family may or may not get why you set things up at celebrations the way you do, you know what’s best to ensure your kids are happy and safe. And along the way, maybe we can all start a new tradition or two!

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Meet Mitchell

Here is a second guest blog from Lori Beesley, who sits on Holland Bloorview’s family advisory committee. Every year Lori goes into her son Mitchell's school class to educate the students about Fragile X. She shares her speech below. I love the way she describes things about Fragile X and Mitchell (above) in a way that any child could relate to. The day she gives her talk, a note is sent home to parents, including Lori's speech and her phone number. "After the first year, I was asked to speak with all the students in the school, so I moved from class to class," Lori says. "As the kids got older, their questions went from things like 'Can I catch Fragile X?' to 'Where will Mitchell live when he's all grown up?' and 'Will he ever be able to get married?'"

Meet Mitchell

Hi there, my name is Lori Beesley. I came here today to talk to you about something called Fragile X syndrome. It is the most common cause of inherited mental impairment in the whole world. In fact, there are thousands of boys and girls everywhere in the world that have Fragile X. To tell you the truth, I had never even heard of Fragile X until many years ago. Then a doctor told us that our son Mitchell had Fragile X syndrome. I know that some of you already know who Mitchell is, because you have been in his class, or from daycare. I’m here to tell you a little about Mitchell, Fragile X, and how it affects our family.

When someone has Fragile X, it means that before they were born, a tiny part inside their brain didn’t grow the same way that most people’s do. Their brain is the same shape and size as everyone else’s, there is just a little, tiny part inside the brain that is different. That tiny part makes them act differently and  learn differently.

Have you ever been in class and the teacher is explaining something, it might be science or math or spelling, and you just don’t get it? You are trying to understand and you just can’t? Put up your hand if that’s ever happened to you. I know it used to happen to me too. You know what I would do? I would ask someone else to explain it to me, a friend or another teacher or my mom or dad. When that new person explained it to me, I would get it. I’ll bet that you know what I mean. The reason that you “get it” is because that other person explained it in a different way, and another part of your brain understood.

People with Fragile X can have a really hard time learning things in the classroom. Sometimes they have to learn the same thing over and over, explained to them in lots of different ways before they “get it." When we were teaching Mitchell what a dog was, we had a book with a picture of a dog and we’d point to it and say “dog." After a while, Mitchell knew that picture was a dog. Then, one day we were at the store and there was a dog tied up. I pointed to it and said “dog." Well, Mitchell looked at me like I was CRAZY.

I knew that he thought that “dog” meant the picture in the book. This dog in the store was brown. The one in the book was black and white. This dog said “woof” and the one in the book didn’t say anything. This dog moved and wagged his tail, and the one in the book always stayed in the same spot.

We decided that we had better try something else with the picture in the book. Next time, when we looked at the book, we said “woof.” Then Mitchell learned that dogs make a noise. Every time we saw a real dog, we said “woof” and one day Mitchell said “dog.” He finally got it. It took Mitchell a long time to learn about dogs, and we had to figure out a way to explain it to him so he could “get it.”.Now he knows and understands all about dogs, and lots of other animals. Sometimes he learns things faster, sometimes slower, just like all of you.

Fragile X makes people act differently too. Their brain lets in too much information all at the same time, which can make them upset. I’ll try to tell you what I mean. Put up your hand if you like to watch TV. Have you ever been watching TV all alone, when all of a sudden your brother or sister starts talking to you, then your mom tells you to do something, then your dad starts up the lawn mower outside, then the phone rings and ALL you want to do is just watch TV? How does that make you feel?

Pretty upset? Kind of mad? Does it make you want to yell at everything? You know what? People with Fragile X feel that way a LOT of the time.

Right now I know that you are all sitting here and listening to me. If you have Fragile X, your brain has trouble focusing on one thing. That means a student with Fragile X might be smelling the floor cleaner, watching someone fidget, feeling the tag in the back of their shirt and trying to pay attention to me all at the same time. And that makes them feel the way you do when you get upset, trying to watch TV. T

Someone with Fragile X can be trying so hard to figure out how to handle all that stuff that's happening to them at once, that they forget how to act appropriately, or the way that they should. They might flap their hands like this, stand up when they should be sitting, or yell out something when they should be quiet. It is their way of dealing with the way they are feeling. Sometimes it can make them feel better, and then sometimes it can make them more upset. Sometimes Mitchell even gets upset about something that happened to him a little while ago, but it’s just sinking in now. That is part of the mystery of living with Mitchell. We have to try to help him learn how to handle things that upset him, in a way that can help him feel better next time.

I know that some of you have asked me why Mitchell won’t say "Hi" to you if you see him outside of school, maybe in the park at the end of our street or up at the plaza. There is a very good explanation for that. I want everyone to think of someone famous right now ---your hero. Maybe a sports hero, a movie or TV star, a singer.

Now picture that tonight you are sitting having dinner with your family and the doorbell rings. You answer the door and there is a huge stretch limo parked outside and the person you were just thinking of is standing right in front of you, saying "Hello!" Chances are you would not say “Hi, come on in.”Your brain would be so busy thinking “Why are they here? How did they get here? OH MY GOODNESS!”

The person would still be standing in front of you and you are still not saying anything. Well, to Mitchell, all of you are HIS heroes. When he sees you outside of school, he’s not expecting it and so it throws him a curve. Kind of like seeing your teacher at the grocery store -- you might be feel weird and awkward. What you don’t know is that a minute after you say "Hi" to Mitchell, he usually says "Hi" back to you, but you miss it. That’s why his dad or I say "Hi" for him. We know he really wants to, he's just overwhelmed at that moment.

The last thing I want to talk to you about is YOU! Mitchell’s dad and I want to tell you that we feel really lucky that Mitchell goes to a school where so many of you know him and try to help him. You are all the best teachers that Mitchell has. He will watch you, and see how you do things, then he will know how to do those same things. If Mitchell is doing something that he shouldn’t be, or acting silly, you can all help him learn the right way to do it, or a better way to behave. He will listen to you.

Even though Mitchell’s brain may not work in the same way as yours, his HEART does. He likes having lots of friends, to play and to laugh with, just like all of you. He likes to ride his bike and scooter, watch videos, and go to the park, just like all of you. He has his good days and his bad days, just like all of you. It’s nice to know that he has people here that care about him and help him through the bad days and laugh with him on the good days. Mitchell and everyone else who has Fragile X have special needs, but we know that as long as Mitchell has people like you around him, he will have a good life! Thank you.

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Some scars fade, some never will

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

Some scars fade, some never will
By Lori Beesley

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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'Our hopes and dreams'

Holly Roos is an American mom to Parker and Allison, who have Fragile X.

A group of bloggers in the Fragile X community are nominating her for a CNN hero award, and I have to say I was moved by this video of her: We have hopes and dreams for our children.

You can read more about her here, and see how she is giving voice to the hopes and needs of families of children with Fragile X and developmental disabilities. Louise

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This and that

This post is a mixed bag.

Saturday was the first night we went trick-or-treating with Ben in a wheelchair. We used to pull him around in a wagon (because he’s tiny), and he would hobble up the stairs to people’s doors or we would carry him on our backs.

But this year it made sense to use his new wheelchair, which he now uses whenever he’s out.

It was an eye-opener to realize how many homes were inaccessible, with two to three steps up to the path, and then numerous steps up to the door. Our house is probably the worst: we live on a steep hill and have about 30 steps up to our house (we bought the house when I was pregnant with Ben).

Most people didn’t come out of their homes to hand out candy. They waited until the kids got up to the door and knocked. So there were at least a couple of streets where we were forced to roll by every single house, without stopping, because we couldn’t make it to the door.

I’ve always thought of our neighbourhood as being welcoming and friendly. But it’s not from a wheelchair.

Check out this new web site about Fragile X, developed by a non-profit group of parents and professionals called the Fragile X Research Foundation of Canada. The group says this most common cause of inherited developmental disability lacks awareness and research funding. I hope we can interview one of the parents in the future.

And this new collection of stories by parents of children with disabilities looks promising: My baby rides the short bus: The unabashedly human experience of raising children with disabilities. It includes a piece by our guest blogger Elizabeth Aquino.

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