Family Archives - Page 50 of 113

May 31, 2010

Mira’s Perfect PINK Party

So Saturday was the great PINK party. Many guests showed up wearing pink for Mira, and Mira happily wore the PINK dress she picked out at The Children’s Place.

All of the decorations were PINK, and most of the presents were PINK, too. The cake? Oh yeah, it was PINK:

The cake was made by Krazy Kakes, a local Columbus small business. Even the inside of the cake was PINK with strawberry filling. Gorgeous, no? It tasted amazing, too! We also had a second PINK cake from Whole Foods for Cordy, which meant that nearly everyone got two slices of cake and was on a sugar high the remainder of the day.

I should have taken more photos. But I was too busy keeping things running. Hopefully someone else snapped a few for me.

And Mira celebrated her birthday in true diva fashion. You may remember that my children have a fondness for Lady Gaga. Well, for Mira it’s more of an obsession now. At preschool they occasionally turn on the radio for the kids, and when a Gaga song comes on, Mira screams, “Da Wadee Gaga!!”

So in true Gaga form, Mira’s preschool teachers made her a birthday crown unlike any other birthday crown ever made in that school.

Lady Gaga? I think you have a new three year old friend.

She wore it with true pride, even out to Bob Evans for dinner. And like Lady Gaga, she appreciated that everyone was looking at her.

What little monster have we created?

Filed Under: family time, growing up, Mira ·

May 27, 2010

Three

By Christina ·

Today I no longer have a toddler.

Today Miranda will start her day as a preschooler, or as she calls it, a “big girl.”

Unlike Cordy, Mira has been planning her third birthday for over a month. She immediately told me she wanted a PINK (her emphasis, not mine) party, with PINK balloons and PINK cake and PINK decorations. (Fun fact: Mira likes pink.) She created most of the guest list. And she’s been very good at making sure we don’t forget that her birthday is in May and she’ll be three.

All this birthday talk has spurred her to think about her future as a big girl, too. She spins stories of how she will someday go to work, and she’ll drive a PINK car to get there. She can’t even say PINK yet – due to her speech apraxia, it sounds more like HINK. However, I can understand her so much better than I could even half a year ago, thanks to all of the hard work she’s put in trying to be understood.

This younger daughter of ours is more than just a little girl – she’s a force of nature. Her impish spirit is obvious to everyone she meets, and her direct and sometimes forceful personality ensures she gets her way. She’s just now three years old, but she has already mastered manipulation, charm, and knowing just how to bat her eyes to get one more cookie. Where Cordy falters socially, Mira shines.

Today my little girl is three, and I’m mourning the baby that’s being traded in for this child. She longs to explore her world and make her place in it, going further from my reach each day, and I’m not ready to let her go yet.

But when bedtime is near, and she climbs onto my lap to cuddle for “jus too moh minuwtes” she nestles her head against my shoulder and reminds me that, “I noh ah baybee, I ah big girl. Buh I m stiw mahmee’s baybee.”

Happy birthday, Mira. You are a big girl, but you will always be my baby.

(There was no way I could leave this photo out.)

Filed Under: growing up, Mira ·

May 22, 2010

When Is The Right Time?

By Christina ·

I don’t know if you’ve seen the new TV series Parenthood, but if not I highly recommend checking it out. I was originally interested in it simply because I was curious how they would portray, well, parenthood. It’s true, marketers have me pegged – put the word parent or mommy or mom in a title, and you can guarantee I’ll check it out.

The show is funny. Very funny. And sometimes painfully funny – in that way where you laugh but inside you cringe a little because you’ve been in that exact same situation and remember how humiliating it was. But the show also takes itself seriously in portraying the lives of an extended family, all very different people in very different situations. These people could be us, and in watching the show you quickly find yourself drawn to identifying with one person who is most like you, yet recognize so many of the struggles faced by the other characters, too.

In watching the show, the one thing I never realized was that Parenthood would also be tackling the subject of autism. In early episodes, one couple discovers that their son is on the spectrum, and their world is turned upside down in so many ways. When I quickly realized where they were going with that plot topic in the first episode, I wasn’t sure how I felt about it. Would they make the topic of autism light and fluffy? Would they make it worse than it really is? Would the boy be little more than a caracature of a child with autism, or would they really make it realistic?

Truth is, they have so far done a brilliant job of walking the line to bring awareness to the condition. I’ve cried several big, fat tears while watching this show because these parents could be us. Hell, their names are Adam and Kristina – how much closer to Aaron and Christina could you get? I watched them struggle with even accepting there might be something wrong with their son, and remembered my own struggles with the same topic. They frantically searched for a “cure” just like I did. They’ve tried to protect Max from those who don’t understand him, the same way we’ve tried to protect Cordy.

Of course it’s a TV show, and there will never be enough time in each episode to present a full, clear picture of autism, but I’ve been impressed with how real it is thus far.

This week’s episode really affected me, though. In it, the family teams up for the Walk for Autism, with Max as family cheerleader, determined to win the trophy. At one point, he shouts, “Let’s help those kids with autism!” and everyone in the room is suddenly aware that Max doesn’t know yet that “those kids with autism” includes him.

I don’t think we’ve ever told Cordy that she has autism. Granted, she’s much younger than the character of Max (who is nine, I think), but it’s never been something we’ve talked about. She’s attended special-needs preschool for three years now where she’s had weekly speech and motor skills therapy. For three quarters of a year she’s participated in a research study for kids with autism, requiring several cognitive and developmental skills tests. She’s taken pills purely at our request, never really knowing why we asked her to take them other than “they help you stay healthy,” just like her vitamins.

But despite saying nothing to her directly about it, there have been clues. She knows she won’t ever wait at a bus stop for her bus like other kids. She’s aware that some kids in her class can’t talk and have meltdowns that sometimes require them to be restrained. For herself, she knows she has “the flappers” who live in her arms and sometimes make her flap. She knows she has irrational sensory fears. And there are times I’m sure I can see right into her mind through her eyes, watching as she fights internal battles with herself over her confusion on social cues and her reactions to the world around her.

The TV show psychologist told Adam and Kristina that they will know when the right time is to tell Max about his autism. I hope the same is true for our family. She’s probably too young to even understand it at this point, and I don’t want to further burden her with the knowledge that she is most definitely not like other kids. She already has moments where she seems so distant and sad, as if she’s pondering how to solve world hunger, wars, and the environment all at once. Why add more weight to such small shoulders?

I don’t want Cordy to feel different, but at the same time I want her to know it’s OK to be different. I sometimes feel like a hypocrite – I’ll stand proud and defend her differences, reminding anyone who would shun her that autism isn’t a choice, but I also want her to improve and hope she’ll be able to fit in better with her peers. It is possible to defend her diffences and yet want her to change in the same breath?

No one said parenting would be easy. It’s no surprise why I watch any show with the word parent in it and participate in the parent blogging community – it’s impossible to do this without looking to others for support and a little validation that I’m not the only one who feels like I’m parenting blindfolded without a net sometimes.

Filed Under: Autism, being a mom, Cordy, pop culture · Tagged: TV

May 18, 2010

Bumpy Road Ahead

By Christina ·

Cordy has spent much of her fifth year of life involved in a clinical research study. We volunteered her for this study of a known medication used to treat ADHD because we hoped the researchers were right and it might also help children with autism who have ADD symptoms. We knew it involved a lot of time on our part, and a lot of uncomfortable situations on Cordy’s part, but we also knew that something else had to be done to help her cope with her world.

It’s been a roller coaster of a ride so far – first we completed ten weeks of the blind study only to find that she was on the placebo during that time. Then we entered into the longer open study, where the medication has been slowly increased and then backed down when Cordy began to show a side-effect of irritability. Cordy has been amazing through all of this, happily swallowing her pills twice a day and enduring blood draws and cognitive testing with (somewhat) little drama every ten weeks. It probably doesn’t hurt that she really likes the research team and they fill her full of Annie’s fruit snacks and animal crackers at each visit.

We’re now nearing the end of the study and while her focus has improved and her repetitive behaviors have decreased, she’s still rating high on hyperactivity and impulsivity, and the irritability never went away. At Friday’s visit, the study doctor determined that she has only moderately improved on the study medication, and the irritability side effect concerned him. As a result, a decision was made to quickly taper off the medication and consider the possibility of a different medication for her. The catch? She’s going two weeks with no medication whatsoever before we’ll look into anything else.

It’s possible this will be a great two weeks. We may find that her improved focus and decreased repetitive behaviors have become learned behaviors and she will do just great with no medication at all. I would love for this to be the case, because while I’m open to medication I’d prefer if she didn’t need it.

But it’s the opposite end of the possibility spectrum that worries me. What if she goes right back to her old behaviors as soon as the medication is out of her system? She could regress to a point where she stares blankly at the TV and shrieks for more if we try to turn it off, or refuses to do anything that requires a sustained mental effort of more than 30 seconds. The flapping could come back full-force along with repeating phrases over and over.

In other words: I’m a little scared. I’ve seen her grow so much over the past few months, developing into a child who can now make friends at the playground, who can write entire sentences and read books and do math problems, and I don’t want to lose who she’s become. It’s already hard for me to accept that she will continue to be in a special-needs classroom for kindergarten next year (with some inclusion in a mainstream kindergarten), but the thought of losing even a little of this progress we’ve made…

Of course, it’s unlikely she’ll fall into that worst-case scenario. But it’s also equally unlikely Cordy’s behaviors will follow the best-case scenario, either. Which means we’re stuck somewhere on the spectrum (and yes, I’m including the double meaning of the word spectrum here), hoping to be higher than lower.

Her last pill is this morning, and then we simply wait it out. If she does regress, we will then meet with the study doctor to consider another medication that might produce the same effects of the last one without the unpleasant side effects.

Let’s hope this “detox” goes well for her or I may be the one needing medication at the end of these next two weeks.

Filed Under: Autism, Cordy, growing up ·

May 10, 2010

Quality Time

By Christina ·

It’s a tradition in my family to always pick out funny cards for any occasion, including Mother’s Day. So I was quite proud of my accomplishment this year, when I selected a card that read on the outside: “Mom, now that I’m a parent, I understand what you went through in raising me…” On the inside: “Hell. Happy Mother’s Day.”

I know I wasn’t the easiest kid to deal with, and I’m glad my mom had the patience to deal with a kid who was really too smart for her own good.

I never suspected that my mother had any regrets in how she raised me. After all, I graduated near the top of my class, attended a well-respected university where I graduated with honors, spent a summer studying in England, married, bought a house, and gave birth to two beautiful daughters of my own. Sure, I’ve got my share of problems, too, but I thought mom had to be pretty proud of her job as mother. In fact, I often wondered how I could ever measure up to her standard in raising my own children.

A few years ago, mom gave me a small piece of advice that made me realize that no matter how well we do, guilt can plague any mother. I don’t remember how the conversation came up, but at one point she became very serious and told me, “Just promise me one thing: when your daughter is sick, take your sick time and be with her. Because no matter what’s going on at work, no matter your deadlines or how much people say they need you to come in that day, they don’t need you as much as your kid.”

Truer words never spoken.

My mom went on to say that she regrets not staying home with me more when I was sick. Instead, she would go to work, believing that they needed her more at work. She usually called in my grandmother to be with me for the day. But she was right – I didn’t want my grandmother, I wanted my mom. My mom was the one I felt most comfortable with, and even though it was the same Campbell’s canned soup, chicken-noodle soup somehow tasted better when my mom made it.

When she retired a few years ago, she had nearly a year of sick time saved up from her 30 years of service. One year. And she could only cash out a tiny fraction of that time. She looked at that lost time as lost opportunity to be with me when I needed her. I’ve tried to tell her that I understood that she needed to work, but I don’t think she’s fully forgiven herself for it. I sometimes think she is trying to make up for that time by spending more time with her granddaughters now.

And so I’ve taken her advice and vowed to spend as much quality time with Cordy and Mira as I can. When one of them is sick, I do all I can to be there for them. And I remember that work will come and go, but nothing can replace the comfort a mother can provide to her children.

Happy Mother’s Day, mom. You probably don’t believe me, but I do actually hear your advice. Sometimes I even follow it. And I want you to know that while we may not have had as much time together as we both would have liked when I was a kid, it was always quality time.