Not in the development books: Child will learn to tease you

Last night, Twinkle, Twinkle Little Star was playing on one of our Pandora baby channels and Max said, "Bar mitzvah!" 

I said, "Huh? You want that song at your bar mitzvah?" We've been making a list of music he'd like the DJ to play. 

Max said, "YEAH!" Then he cracked up. 

Gotcha, Mom! 

Max has learned how to tease me. It wasn't something I ever missed during his development, same way I have never once regretted that Max doesn't say "What-ever!" to me like SOME siblings I know. But now that he's teasing me, I am psyched. Because this is cognitive progress. Also, this is what teens do.

There's some gentle mocking happening, too. The other day, I pulled a box of crackers out of the snack drawer only I'd put them in upside down and a bunch spilled onto the floor. "Ha ha ha ha ha!" said Max, giving me his best you're-such-a-lovable-klutz grin.

Lately, he's also doing this funny thing that I am pretty sure he got from his teacher, Linda, who has a great sense of humor. I'll ask him a question—say, "Max, do you want to run to the supermarket with me?"—and he'll put one finger to his forehead, like he's thinking, then say, "Hmmmm...NO!"

I'm not just excited by all this, I'm delighted. As I've said before, I subscribe to the "What not to expect from your child with special needs" school of parenting. I have plenty of hopes for Max's development, but no expectations. Because he will do what is he capable of doing, on his own timeline.
 
And so: Yeah, teasing! I'm going to work on getting Max to say, "Kid-ding!" Not the least of which is, he needs to get better at articulating k's and d's.

What my child with cerebral palsy taught me: Parents share

Today is World Cerebral Palsy Day, dedicated to ideas that will improve life for people with CP. Share your suggestions over at the site! Today, I'm also thinking about how Max has improved my life. One thing he's taught me—one gigantic thing he's taught me—is the variety of abilities that exist in this world. I now know that there is no one "right" way of walking, talking, playing or basically doing anything. Max has enabled me to be a more open-minded person. 

I asked other parents of children with cerebral palsy what their kids have taught them. Here's what they had to say:

"This little beauty has taught me so much in her five years. She has taught me what true strength and determination are, she has taught me how to truly communicate without ever speaking a word, she has taught me patience (in more ways than one), and she has taught me to find joy through the good and bad. And how could you not enjoy waking up to this sweet face every day!!!"—Rebecca M.

"Matt has taught us to celebrate every inch stone. What may seem small to some people are the big things in our family."—Brandi G. 

"Our son Andrew has taught us so much. Lessons like: not to take for granted your talents and abilities; how to be patient when you are really frustrated; how to be an amazing friend to all who will let you and many more. He also teaches us much about perseverance and hope! With a ridiculously busy schedule for a 7-year-old that includes full-time school (in a mainstream classroom) and at least five therapy, doctor and physical activity appointments per week, every week after school—and summers spent doing daily intensive medical treatments for many weeks—he keeps on fighting and improving! Praise God!"—Kellie B.

"Morgan has taught me to never sweat the small stuff and to be thankful 

for every small step."—Jenny T.

"My child has taught me to laugh when I feel like crying...to be proud when I feel like breaking...and to not just fly but soar!"—Julie K.

"To not accept the limits other want to place on a child with CP—even medical professionals! These kids have so much more potential and possibilities than others often give them credit for. The determination, work ethic and positive attitude Cathryn shows us day in and day out is nothing short of inspiring and astonishing despite the surgeries, hardships and struggles. She radiates sunshine in the face of daily difficulty."—Cynthia Frisina, Reaching for the Stars: A Cerebral Palsy Foundation

"Developmental milestones can be celebrated whenever they come. We call it 'Jabari time.' I have learned that success can look different for each of my children. I love being a parent of a CP kid. I am such a better person because of it."—Emily F.

"My son has taught me that hard work and determination will get you further than anyone thinks. Forget being born smart or athletic—work to make yourself these things."
—Katy Davidson Monnot, Northshore Parent

"To never ever give up and to not care what anyone has to say about you!"—Carrie W. 

"Max has taught me no milestone is too small and how to be patient. If he's not sad about his CP then I refuse to be sad about it too."—Ashlee A.

"Through my child's strength, I've learned how strong I am while still finding beauty in the most difficult times."—Melissa S.

"Our little one has taught us the importance of living in the present moment and celebrating the here and now rather than worrying about the 'could be's' and 'what if's.'"—Rebecca F.

"To have patience and compassion even when it exhausting and frustrating to deal with a non-verbal quad cp kiddo. If anything, it's taught me to appreciate what I have and hope others see her and our struggles and think the same. It's also taught me to take docs at half their guesses and never give up."—Megan P.

"Lola has taught us that we should never put limits on what she can accomplish. She amazes us all the time. We don't care what her MRI looks like or what a medical professional tells us about her future. She is incredible, resilient and amazing. We love her sass."—Gillian E.  

"Tucker has taught us that each day is full of fun. So much fun that sometimes you just need two hats!"—Katie A.

 "My little love bug has taught us that every person does things 
at their own speed."—Kristin G.

"Patience, tolerance, love."—Shandon F.

"I have learned so many lessons but the key one? I guess to not yearn for the life you don't have, but instead love the life you've got. Like the fact that my 14-year-old may not be able to say much, but she can say 'I love you' and tells me that daily  She couldn't care less how many likes a FB post got, but finds joy in every moment. She won't be a scholar or an athlete but her laugh will never fail to make you grin from ear to ear." —Julie U.

"Our Gabe has taught me to have immense joy in the midst of deep suffering. To work hard and to the best of my ability. To realize that the most important measure of success is how well we love each other."—Becki I.

"I hope to someday be as positive and courageous as my 13-year-old twins Nicolas and Brook!"—Jennifer K.

"Hannah brings me joy. She has taught me to smile. She makes my heart hurt with the love she brings to our family. I love her with all my heart and soul."—Margie M.

 "Marcus, who has right hemiplegia and is legally blind, all due to being horribly abused when he was 2, has taught me about determination and the healing power of love. He just turned 34 on Sunday."—Galen G.

"There is no perfect child. No right or wrong way to live life. We can either spend days mourning what we should have had or what we are missing out of. Or we live each day making the best of what we have. Enjoying every smile, every accomplishment and even every setback. Because they challenge us to try harder and prove we can do it."—Brenda O. 

Read about cerebral palsy research breakthroughs over at Parents.com—and find out how you can participate in an important CP study. 

For a gallery of photos of kids with CP, check out the AZ is Amazing blog, written by a young woman with CP. 

9 best things to do for a kid with cerebral palsy (that don't feel like work)

What are your best tips for kids with cerebral palsy? That's what I asked an amazing pediatric therapist in honor of National Cerebral Palsy Awareness Day, happening this Sunday March 25. Stacy M. Menz, based in the San Francisco Bay area, has worked  with hundreds of kids with CP. She blogs at Starfish Therapies (a great blog, check it out!) and she's a columnist for PediaStaff. I know we all already have more than enough therapy to do with our kids (understatement alert!); what's genius about Stacy's suggestions is that they are basic lifestyle ideas you can easily incorporate into your days. And you're going to love the part where she suggests giving yourself and your kid breaks!

When I sat down to write this, I thought it would be a breeze. Boy, was I wrong. Each item seemed to morph into many items and then I’d realize I still forgot something that I really wanted to share. Writing this list, while thinking of all the children I have seen with CP over the years, made me really appreciate the differences in each child with CP I have met. I know every child with CP is different, but I have tried to make my top points applicable to all!

1. Avoid w-sitting. This is the number one things I tell almost all of my families. The topic of w-sitting tends to bring up a lot of controversy usually because parents have sat this way themselves and have not noticed any detrimental effects. Kids who have CP often sit this way because it provides them with a really stable base of support allowing them sit independently. However, that comes at a cost. W-sitting will also limit and hinder their ability to develop trunk strength, trunk rotation, hand preference and independent movement in and out of sitting. Tis position also encourages hamstring tightness, hip and femur alignment issues, and poor posture. Instead of w-sitting work with your therapists to find some alternatives ways to sit independently as well as work on other activities. 

2. Give kids time to be kids. Kids with CP are often so scheduled with therapy appointments that they don’t have time to be a kid, goof off, and do the things other kids do. Give them unstructured play time with their peers or siblings or even with you. Let them guide the interaction and see where it will lead.  The best part is that usually these unstructured moments are just as therapeutic as all the structured therapy. It provides them a great opportunity for them to work on integrating the skills they learn in therapy and generalizing it out into their day-to-day environment.

3. Maintain range of motion early. Maintaining range of motion at various joints in the body can be a challenge when a child has a diagnosis of CP, especially as they grow and get older. With each growth spurt their muscles can get a little tighter and they lose just a little bit more range. This is true for both kids who have low tone and kids who have high tone. Depending on the severity, decreased range of motion can affect your child’s ability to move, or even the ability to maintain your child’s hygiene.  Start early and get into the habit of stretching your child or encouraging a multitude of positions. It’s a lot easier to maintain their range of motion than it is to get it back. Some areas to pay attention to are your child’s spine, hamstrings, ankles, hands, and hips.

4. Don't be afraid to take therapy vacations! Its very easy to get caught up in the more-is-better mindset, but at the same time giving your child a break every once in a while is good for them. It allows their bodies and brains a chance to take all of the skills and pieces of skills that they have been practicing over and over and bring it together in a way that ‘clicks’.  In addition it gives their bodies time to rest a bit.  Think about training for a race, taper days are included in the work out program so that your body can recover; well kids need some recovery time as well!  I often find that after a child comes back from a vacation or a break they will move up to the next level of whatever skill they have been working on.

5. Know that tone and strength are different. Many kids with CP have altered muscle tone. This can be high tone, low tone or mixed tone (a combination of high and low). Low tone is a little easier to see the underlying weakness and therefore strengthening low tone muscles tends to make sense. High tone is a little more challenging because the muscles tend to be "turned on" and stiffer already, so strengthening seems counterintuitive. The reality is that under that high tone, the muscle is weak and by strengthening the muscles, it can help the child to regulate and have some control over their tone.  Overall, strengthening muscles for kids with CP is important because the strength is what provides them the means to increase their function.

6. Core strengthening is important, too! All strengthening is important—however, the core is the foundation that allows kids to move and to function. The more stable they are in their core the more function they will be able to achieve. A strong core is able to react to changes in balance, sit up tall for increased attention, improve breathing, vocalization and eating, enhances fine motor control, and is involved in almost any activity or function that you want your child to master.

7. Promote independence. Encouraging your child’s mobility and providing them the resources to have independent mobility can be a fine line to walk. Many kids with CP are reliant on their parents, caregivers and aides for mobility and/or interaction. Providing your child a means of independent exploration and mobility allows them to explore their environment, interact with their peers, promote self reliance, and enhances cognitive skills. Providing them a means for independent mobility can happen in many ways. It can be power mobility or an assistive device, or it can be teaching them self directed behavior so that they don’t need to rely on you for step by step cues on what to do next. Just because you provide them with assistive devices or wheelchairs doesn’t mean that you have to stop working on progressing their mobility without the assistive device. In fact, a lot of times gaining independent movement in an assistive device can help foster the desire to move and thereby increase their self-motivation. In addition, let your child try tasks independently even if its messy (like feeding) they feel a sense of accomplishment when they get to do things on their own.

8. Mix harder stuff with easier stuff. Think about when you are learning a new skill, how often do you have to practice it until you master it? Quite a bit, I’m sure. During that time required for practice, it’s energy-consuming both physically and mentally to learn the task. For kids with CP, every new skill requires exponentially more practice and more energy than when we learn something new. So what may seem simple to us—such as walking across a room, or eating a meal—can be a workout for a child with CP. But with practice and time, these challenging tasks will get easier. Don’t give up when something is really difficult; try mixing it in on a regular basis with easier activities to prevent frustration for both you and your child. For example, if I'm working on walking with a kiddo and it's hard for them, but they are good at standing or crawling I'll have them practice walking for a bit and then stand at their destination to read a book or play with a toy or use the iPad and then if they want they can crawl back to the 'starting line' where we started practicing walking and try again. This will provide them with practice of a challenging task and give them a rest (mentally and/or physically) while successfully completing another task.

9. Encourage your kid to be active every day. Kids are meant to be active and being active promotes a healthy lifestyle. However, many kids with CP have the tendency to have poor fitness as a result of their challenges with movement. Encourage this by finding ways to get them active daily.  It doesn’t have to be structured: Spend time at the park, go in the water with them, make up games at home, or see what activities your community offers. Regardless of your child’s ability to move, there are ways they can be active to promote their health and, most importantly, have FUN!

On translating my child

The really, really good news: Max has been trying to say more stuff lately.

The hard part is that a lot of times, we're not sure what he's saying. Yes, we can dash over to the iPad and try to get him to show us with the Proloquo2Go app, but that's not always practical and sometimes, honestly, I just want to figure it out myself.

Today, we had a bunch of friends over for a barbecue, and Max was standing by the swingset.

"Aaaaaay," he said, pointing to the wooden frame of the set.

We were all stumped.

"Aaaaaay," said Max. "Aaaaaaay! Aaaaaaay! Aaaaaaay!"

These are the moments when I get really frustrated with myself. Shouldn't I be able to get what my own child is saying? Where's that maternal instinct?

It's painful when a child who has so much trouble with speech is trying so, so hard to tell you something, and you're not able to understand. Sometimes, I wing it. "Yes, Max!" or "Oh, wow!" I'll say, hoping he'll repeat himself so the next time I'll catch it. I feel a little bad about pretending, but it feels even worse to not comprehend what Max is attempting to tell me. Once in a while, Sabrina jumps in and translates. She's a little better at it than Dave and I are.

Suddenly, though, I got what Max was saying. And I couldn't stop grinning. The frame of our swingset forms the shape of the letter "a," the second letter in Max's name. He's gotten really into in spelling out his name.


Later, he showed us an "x." Not sure what he's going to do for an "m" but I'll bet he comes up with something.

I'm hoping that, with time, Max's speech gets more intelligible. Years ago, when Max was around three, I asked our pediatric neurologist if he thought Max would talk. He said yes, he would, and that he would sound like a deaf person. That's true, except Max doesn't sound nearly as clear. Manipulating his tongue to say consonants is really hard for him. He has "m" and "r" down pat, and "x" and "g" more or less, and on occasion I've heard a "b" and "d," but there are several consonants I have yet to hear, including "c" and "f" and "p" and "s."

But I have hope. Lots and lots of hope.

How is your child's speech coming along?

Can The Tooth Fairy collect unemployment?

Max is losing his teeth. Five, so far. He looks even cuter than usual. Our babysitter, Linnette, has been joking about getting him dentures. Only I don't have a single one of those teeth. Max has been swallowing them.

It happened last night before my eyes. I was helping Max brush his teeth, and all of a sudden there was blood on the toothbrush; I looked in his mouth and saw a gap in his lower jaw where a little tooth used to be. Only it was nowhere to be found. Max has oral-motor issues, and isn't able to spit out a tooth or notice there's one floating around in his mouth.

I can vividly recall the thrill of a loose tooth when I was Max's age; I wiggled out a few in my day. And I remember the exciting anticipation of a visit from The Tooth Fairy, who'd leave me a whole dollar in exchange for my paper-towel wrapped tooth. Last night, I got a little bummed out. Bummed that I didn't have one of Max's teeth to preserve as a memory of his childhood. Bummed that Max wasn't going to experience The Tooth Fairy—not just because he didn't have a tooth to leave under his pillow, but also because he doesn't get the concept of a Tooth Fairy. Not yet, anyway.

Then I got a grip. I was doing it again, projecting visions of my own childhood onto Max. I've written before about wishing Max could lick lollipops and jump on a pogo stick, the joys I experienced. Thing is, he's having a different kind of childhood—one that's just as happy as mine was, if not more. He doesn't need a visit from The Tooth Fairy because he is perfectly content without her. (Is it un-p.c. to assume it's a her?)

"Max! You lost a tooth!" I said. "Say 'Aaahhh.' Say 'Aaaaaaaahhhhhhhh.'"

He giggled and said "Aaaahhhhh." I got inside his mouth with a tissue and stopped the bleeding.

Then I grabbed a few of his stuffed animals and made them kiss his jaw. I kept saying "Buh-bye, tooth!" He thought that was funny, too.

Guess The Tooth Fairy is out of a job at our house.

Photo by Peter Miller

C is for Celebrate

The most amazing thing has been happening: Max is recognizing letters. His occupational therapist at school wrote to tell me that she drew some letters on the ground with sidewalk chalk and Max clearly said a "C." This gives me hope, real hope, that he will be able to read. If this had happened years ago, I would have immediately called the OT and thrown a barrage of questions at her—do you think this means he'll be able to read? Have you worked with other kids like Max who took a long time to learn the alphabet but were eventually able to read? Back then, I desperately wanted someone to have a crystal ball. Now, I savor his progress and try not to read too much into it.

The speech is coming along, too. Consonants remain tough, but he has a pretty distinctive "Mommy's home!" that he says when I walk in through the door at night. Those have to be the two best words ever.

The kids are off on spring break next week, I'm not, though next month we are taking them on a Disney cruise. It's coming in handy for threats ("Pick up the toys or you're not going on the cruise!").

Happy Easter, Happy Passover, Happy Spring!