Wednesday, July 31, 2013

9 car games to boost your child's speech development

This guest post is from Katie Yeh, M.A., CCC-SLP, a pediatric speech-language pathologist who blogs at Playing With Words 365 where she shares information about speech and language development, therapy ideas and tips, intervention strategies and a little about her family life too. She's mom to two kids ages 4 and 2, with one more on the way. Katie is a regular contributor to Pediastaff's blog (thanks to owner Heidi Kay for connecting us) and The Friendship Circle's blog. She is also a master of making the most of road trips, as you'll see. 

It's SUMMER, the most popular time of year to jump in the car for a day-cation, or better yet, a road trip! If you have children with speech and language delays, long rides can be a great time to play games that target these skills. Most of these activities have a language base but can be used to target speech skills as well. (Wondering what the difference is between speech and language? Check out my post What is the Difference Between Speech and Language?)

1. You Do, I Do
For children who are not yet talking or are just beginning to speak, a very important pre-verbal skill is imitation. Children need to be able to imitate to learn and use language. As your child sits in his car seat making different sounds, words, motor movements and facial expressions, imitate him! This may seem silly at first, but this can teach your little ones the power of imitation. It is always so fun to see a child's face when you realize you are imitating him. And soon, he will be imitating you!

2. I Say, You Say
This is the opposite of the above game—your child imitates simple speech sounds. The best ones to start with are baa, maaa, paaa, taaa and daaa, although if your child is working on specific sounds, be sure to include those. You can start with just one sound like ma ma ma, and then move onto more complex combinations like ma ba, pa ba and so on. When your little one imitates, get really excited so they get that positive reinforcement to keep it up! You can even do some fine and gross motor-movements to accompany the sounds like clapping hands or touching different body parts.

3. Sing Songs (With A Twist)
Of course, any song your child likes works on speech and language skills (yes, even a little One Direction). A few pointers
• If your child is working on producing specific sounds, try singing songs that have a lot of that sound in it. For example, if your child is working on the /s/ sounds or /s/ blends, The Itsy Bitsy Spider is a great song for this.  
• Fill in the blank: Stop singing at some point in the song and have your child "fill in the blank" or finish the line. 
• Sing at a pace that your child can keep up with. Some children with significant articulation delays or those with motor speech delays (apraxia or dysarthria) may need to start signing at a slower pace to be able to participate.

4. I Spy: Inside Version!
• Rather than playing I Spy with objects outside of the car, do objects in the car. This keeps the game a little more simple for children who are struggling with speech and language development. Items in closer proximity provide more easily accessible cues.
• If your child has flashcards from the speech pathologist for home practice, you can tape the cards around the car and play I Spy with the cards.
• Play the game with a picture book. You'll just need to sit next to him, and have a fun picture book handy. Just open to a page and play I Spy.

5. Silly Voices Game

This is another imitation game that focuses on intonation. Have your child imitate your words/phrases, but say them in silly voices: sad, mad, annoyed, scared, high pitched, low pitched, etc. This is a great activity to work on teaching emotions as well as practicing the actual words and intonation patterns. To get even more silly, try articulating words like a pirate, tiger or football player would—or in any fun way that will engage your child. 

6. The Category Game
Another simple word game, where you see who can name the most items in a given category. This one works well with toddlers all the way up to teens. The categories can be as simple as farm animals, things that have wheels or things that are green to more complex ones like, say, things that have bumps.

7. 20 Hints
The popular car game 20 Questions can be a little difficult for some children with speech/language delays. Another variation is 20 Hints. Rather than have your child ask you 20 questions to figure out what you are thinking about, instead give your child 20 hints about what you are thinking about. For example, if you are thinking of a strawberry, you can start with "I am thinking of something that is red" and then give your child an opportunity to guess something red. Then give another hint such as "I am thinking of something that is red and a fruit" and so on until your child has enough information to guess correctly. Like most games I am sharing here, you can make the targets easy or hard depending on your child's ability level.

8. The Opposite Game
This is a simple word game where you come up with a word and see who in the car can come up with a word that means the opposite. Start with simple concepts such as big/small, tall/short, in/out and then move up to bigger and more complex words, depending on your child's ability level.

9. Safety Info Game
So this isn't exactly just a speech and language activity, but it is one that I think is important and involves speech and language skills! I started teaching my own daughter some of these things in our rides back and forth to school, swim lessons and so on. To help your child memorize key pieces of safety information including their full name, parents and siblings names, city name, address and home phone number, teach them in the tunes of your child's favorite songs or in other sing-song patterns. Practice asking them for this information over and over in different settings to help with generalization—and keep the information fresh in their little minds.

Follow Katie on Facebook and Pinterest for more speech and language tips. 

Other posts from Katie to check out:

Tuesday, July 30, 2013

On getting sucked into special needs parent self-pity

It was the kabobs that started it. A lovely article in Real Simple magazine with 10 variations—a plum and oregano chicken kabob, a miso-glazed mushroom kabob, a halibut, potato and scallion kabob. As I practically drooled onto the page, it occurred to me that Max would have a hard time eating them. Dave or I would have to slide the pieces off the skewers and cut each up into bits, or feed him something else entirely.

Suddenly, I wasn't looking at some delicious dinner possibilities, I was looking at a bunch of choking hazards. I sighed.

Last night, sitting on my couch at 9:55 p.m., I got sucked into self-pity. Why can't we just be a family who enjoys a barbecue with kabobs? I thought. Meanwhile, I'd opened my email to find a message from a coordinator at a program Max is going to this summer. Along with the forms, she needed me to provide a prescription for Diastat (in case of seizures) and the Auvi-Q (in case of allergic reaction). Aaargh! More stuff to do! I thought. And then: Why does everything have to be so hard? I wish my life was easier.

It's not often that I wallow. Every day, I handle plenty of stuff for Max's benefit—Sabrina's, too—and I don't think twice about it. That's what we moms do: We do. Every once in a while, though, I get the woe-is-me blues about the extra responsibilities and challenges that come with having a child who has special needs.

The pity struck a lot more often when Max was a baby, when I was overwhelmed with all the therapy to-dos and full of anxiety about his future. I just wanted to be one of those moms serenely wheeling her babbling tot down the street or watching him play on the teeter-totter at the playground, and it pained me that I wasn't. Crying in the shower was as much of a daily habit as shampooing my hair.

As Max progressed and I matured as a parent, the tears receded. I rarely cry anymore about what happened to him. I look at Max and see an amazing kid, not a tragedy. I've learned not to peer too hard into the future for answers nobody has. But I still have bouts of pity—for me, for Dave, for our family. Even though I can't stand it when others pity me (or Max), I let myself go there.

Restaurants have long been a trigger; when Max has a sensory freakout, I ache to be one of those families happily chowing down. I pity us when Dave and I struggle to wrap our work life around a medical appointment or a string of them, as happened recently with serial casting for Max's feet. I feel a twinge of regret every single time I hear about a family going on a hiking trip or some other physical adventure Max isn't yet capable of tackling. And when I go over expenses with Dave, wow, do I pity us.

Sometimes, as happened on the couch, the pity onset is unpredictable. There is no known antidote, not even Turkey Hill Peanut Butter Pie Frozen Yogurt. If Dave is around I'll talk it through with him and that helps. But more likely than not, I'll sit there and wallow for a while. And that's OK.

Last night, I stared into space, mulling over kabobs and taking care of Max.

And then I turned the page.

Monday, July 29, 2013

The special needs community: united or divided?

The  special needs community: Is it united or divided? That question's been on my mind since I got back from the BlogHer conference, which was the usual wonderful whirlwind of mingling, musing, chatting, connecting and squee-ing. I ran a town-hall type meeting with the awesome Jen Myers on HealthMinder Day, part of the Special Needs and Caregiving track and please, won't you come next year?!

One topic that came up in conversation in discussion and on my Facebook page is the divisions that people feel exist within the special needs community. If we share similar purposes and goals, people wondered, why does the community feel so divided at times?

I've felt that as a parent blogging community, we are united in our goal of advocating for acceptance and inclusion. We speak out when celebs like Drake use insulting words about disability. We write openly and fervently about our wishes that people would spare our kids the pity and see all their abilities, not just their disabilities. And we are very united in celebrating our children's progress and achievements. While I was at the conference, Max's teacher emailed me to say that during a school fire drill he led his class to their meeting point, and then back to class. I shared that on Facebook, and got a whole other rush of bliss from the "Go Max go!" responses.

As parents, we also share a goal of bettering our children's lives. Of course, it makes sense that some of us rally around associations and foundations for our children's specific disabilities. But perhaps we could be doing a better job of sharing resources. As Meriah Nichols of With A Little Moxie said on Facebook, "I'd love to hear more talk and ideas on cross disability collaboration and community building—including more collaboration between people with disabilities and parents who have kids with disabilities...."

I knew what she meant. As the parent of a child with special needs I tend to feel as if I don't have a rightful part in the adult disability dialogue, and I'm always grateful for whatever feedback and insights I get from adults with disabilities I've connected with online. Meriah is deaf, and has a child with Down syndrome, so she inhabits both worlds. Louise Kinross of Bloom, another online friend I met up with at BlogHer, has a 19-year-old with a rare genetic syndrome and manages communications for Holland Bloorview Kids Rehabilitation Hospital, so she also has a good handle on the topic. As she noted, "The disability community itself needs to look at how it discriminates between different types of disabilities—instead of uniting to achieve human rights for all."

(I had to smile when Louise emailed to say she'd stopped by a BlogHer workshop called "Rocking Your Otherness" that she thought had to do with differences—except it was about style and beauty.)

Me, I've felt a divide when I hear about programs geared toward one type of special needs. By that I do not mean the fundraisers or awareness events, I mean efforts like the "autism-friendly" Broadway performances. By name, they're exclusionary to kids with other special needs who have sensory issues. Calling them "sensory-friendly" would be far more welcoming.

What are your thoughts on the topic? I wish you could have been with us at BlogHer to discuss, but by all means, have your say here.

Illustration: iStock

Friday, July 26, 2013

Special Needs Blogger Weekend Link-Up: Whatcha got?

It's another Special Needs Blogger Weekend Link-Up, a place to share posts and read a bunch from parents who totally get it.

The idea

Link to a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I Am Saving Up To Go To Carsland

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, July 25, 2013

Feeding tips for kids with special needs

Max has been eating a lot lately. For breakfast alone, the kid can down three oatmeals, an egg burrito and chocolate milk. Hello, growth spurt! Happily, Max's ability to eat and drink have improved over the years (the cerebral palsy messes with tongue control and swallowing), but he still has issues with retention and he isn't yet up to chewing on crunchy or hard foods.

I recently went to a therapy session at his school with a well-respected, experienced feeding therapist, and wanted to share some of her tips.

Practice with crunchy foods
Place a crunchy item that easily dissolves, like a Cheez Doodles or onion ring, on your child's molar to practice biting and crunching. We also practice this with French toast sticks, strips of grilled cheese and pieces of potato. 

Thicken thin liquids
The idea is to make liquids more of a nectar consistency, so more is retained. We add Hormel Thick & Easy to chocolate milk and other beverages. The stuff used to only come in canisters, but is now available in packets. CVS now makes its own Instant Food Thickener and it's a good deal. Hormel also has pre-thickened juices, along with already-thickened water (but, really, it's a no-brainer to dump the stuff in yourself). You can also mix applesauce and water for a thickened juice, or yogurt and milk, or just buy some juice purees like the ones Gerber Graduates and Peter Rabbit Organics make.

Strengthen jaws with Chewy Tubes
We'd been using these right before meals, to loosen up Max's jaw, but this therapist felt pretty strongly that meals should be focused on eating, not therapy. So now we use these before snacks and during the actual therapy. We place the stick on Max's back right molar, have him bite down and count to ten, repeat three more times, then switch to his other molar.

Practice sipping with fat straws
Dip a fat straw into chocolate pudding so Max learns to close his lips around the straw, the therapist suggested. Eventually, she promised, he will suck the pudding out from inside the straw. It hasn't happened yet, but Max sure has been enjoying practicing. Hot tip: Burger King has fat straws. (Combine that with my penchant for swiping those stubby IKEA pencils and I'm turning into a virtual kleptomaniac.)  
Make kids who drool more aware of swallowing
Kids with cerebral palsy and other oral motor issues often can't manage their front salivary glands and tongue, so saliva pools and doesn't get thrust back, toward the throat. Hence, the drool. There's a patch that can help dry up saliva, the Transderm Scop (it's usually used for sea sickness) and even surgery to reverse salivary glands, but I haven't wanted to go those routes. The therapist recommended that, using a straw as a pipette, we drip ice water into Max's mouth under his tongue to make him more aware of swallowing a pool of water. He has to learn to gather it together and move it back, a movement that does not come naturally to him. "Cue him if you see him pooling by tapping on his tongue," she said. She also suggested Max wear wristbands, and we could remind him to wipe the drool; it's a great tip, but Max hasn't been into the wristbands. Even purple ones. 

Lean forward during tooth-brushing
Tooth-brushing is a challenge because Max doesn't spit. So she recommended we bend him slightly forward, so liquid will run out. Such a simple thing, but a big help. 

Wednesday, July 24, 2013

This Is How I Do It: Kristi Campbell of Finding Ninee

This is the latest post in the This Is How I Do It series, which features bloggers who have kids with special needs and their best tips for juggling parenthood, special needs and life in general. 

Blogger: Kristi Campbell of FindingNinee 

Her child: Tucker, 4, who has autism spectrum disorder, speech and language delay (possible dyspraxia), social/emotional delays and sensory issues.

My three biggest secrets to sanity are…
Finding in-real-life friends in similar situations. The camaraderie I feel with parents from Tucker’s PAC (preschool autism classroom) has been life and attitude changing. Bloggers. Moms. Worriers. Warriors. Supporters. People who get it. Community. Remembering that I am me and that I have a voice and a soul that exist outside of my son and his needs.

I keep track of my child’s therapy and medical appointments by…
We’re blessed that so much of Tucker’s therapy happens during his long school days. For his other appointments, I find iPhone calendar alerts to be extremely helpful. I love that I can set the alerts to remind me multiple times of each appointment.     

One way I relax (actually really, really relax) is…
Just this week, I treated myself to a haircut and highlights and realized how much I miss spending an occasional three hours at a chi-chi salon having a wonderfully talented man make me feel pretty.  Before becoming a mom, this was a quarterly routine. Since Tucker was born, it’s one I’ve skipped and have vowed to stop skipping. In fact, after my appointment, I immediately booked another for three months from now.

When I get bummed out about something related to my child, one thing that gives me a lift is…
Knowing how lucky we are. Reminding myself that there are mothers who have had to say forever goodbyes. Appreciating the moments. Focusing not on Tucker being unable to say his name and instead on the fact that he wants to. The progress. 

If it weren’t for [fill in the blank], I am not sure I would be able to get through the day
Goofiness. Laughter. Snuggles. Unsubscribing from every parenting milestone email I signed up for when my baby was born.

The way my husband and I split up responsibilities for caring for our child is…
I paused my career about four minutes after Tucker was born and have only recently gone back to work part-time, so most of the responsibility has been mine. Sometimes, for us, splitting the responsibilities has meant recognizing when the other (usually me) needs to sleep in on the weekend and finding a way to make that happen.

The way I deal if strangers stare at my kid or say things is…
Obviously, I don’t like people staring or wondering “what’s wrong” with my son. I usually smile and say hello and try to engage in “normal mom talk,” which often leads to me sharing that my son is on the autism spectrum. On the flip side, I recognize that I stare, too. If I see a child on a playground or out with his parents, and he’s obviously special or reminds me of my son, I stare. I’m not doing it to be rude. I stare because I’m looking for my tribe. Special needs parents provide a sanctuary and a level of understanding that typical parents aren’t always able to.

One great therapy technique I recently learned for my child from his therapist is…
Trying something new and bizarre to get him to pronounce a particular sound. We’ve been trying to bring Tucker closer to being able to imitate the “f” sound. We manually manipulate his bottom lip to help him feel from where the sound originates. He hates it and I’ve been awful at not giving up when he begins to cry. Recently, at the playground, Tucker was lying on the top of the slide upside-down. I took out my phone to snap a photo and it became obvious that he wanted it. I used this opportunity to try and make him say “ph.” It worked and now every night at the playground, he lies on the top of the slide upside-down and pushes his lower lip in and tries to say “ph.” What used to make him cry has become a game for both of us.

One site I’ve found lots of good ideas on is...
We recently used to find a sitter and I really like that I was able to select potential candidates using criteria that includes whether they are willing to work with special needs in the first place. While I found many of the applicants flaky, we have come up with two great ones—one of whom we’ve just begun to use (a huge success for us as it’s the first time we’ve ever felt comfortable enough to use a sitter).   

My favorite recent post is...
The Land of Empathy and Wonder. While I like the post on its own, it’s become really important to me over the weeks. The love and support that it received inspired a new blog series called Our Landwhere empathy and wonder rule. The idea behind it is to remind the world that it’s possible and necessary for all of us to see beyond differences and quirks and instead appreciate the magic. It’s been utterly inspiring to read and share each unique voice. To date, they include a 19-year old college student with cerebral palsy, a music therapist for a variety of kids with differing-abilities, a special needs mom, and a woman who encourages self-compassion.   

I rock because…
Tucker has given me the ability to see. To see everybody. While I continue to register their wheel chairs, their white canes, and their silence, I see them. Seeing each person behind his differing ability has given me a bigger, more diverse and wonderful world. That rocks. And because of it, so do I.

Tuesday, July 23, 2013

Why I carry dead beetles around in my purse

Some moms carry tissues in their purse. Others pack breath mints, mini bottles of Purell, lip balm. Me, I tote around dead beetles.

This is not because of, say, some sacred ritual involving beetles and evil spirits. It is because I had the best of intentions for getting rid of the ones on our lawn, and because I didn't end up having time to deal since a bazillion other things got in the way. It is pretty much the story of my mom life.

Of the two people in my marriage, I am the one far more likely to notice the little things going wrong around the house, like the peeling paint on the master bathroom ceiling, the funny smell in the fridge or the holes in the leaves of the hosts that border our front lawn. The latter has been driving me particularly batty. I grew up in an apartment, and take pride in having a nice-looking house and lawn. Thing is, I hadn't seen any critters munching on the leaves but I had spotted beetles crawling around, so I wondered if it might be them. 

I could have asked our nice exterminator to stop by, only he lives in another town and I got it into my head that I could just mail him beetles to check out. He was all, "Sure! Mail me some specimens." And so I stood on the porch one night, in my nightgown no less because I am that suburbanized, and scooped a few beetles into a baggie. I'm not skeeved by them—my tolerance for gross stuff has hit an all-time high (low?) since having kids. I put the baggie into my work tote. 

I kept meaning to mail it, only I kept forgetting. I'd be walking to work and think "Got to mail those beetles!" but then I'd get sucked into my day. Except for the times when I reached in to grab something from my bag and I accidentally pulled out the bag o' beetles. This happened when I went to pay for my coffee one morning. "Eeew, what is that?!" the cashier asked. "Dead beetles!" I said, as if that explained everything, then dashed out. 

Like most moms, the to-dos in my life are never-ending. I don't even bother to keep a list, because it would freak me out. Instead, I rely on memory (pretty good, occasionally spotty, especially when it comes to mailing dead bugs) and jot down key stuff to tackle each day. I never did write "mail beetles," which partly explains why it took so long. 

Generally, I'm a person who likes to get things done a.s.a.p. But parenthood has taught me that I can't humanly do it all, and that pondering the stuff I can't get to is a waste of mental energy. And so, I have become a woman who has no problem walking around with dead beetles in her purse.

Maybe a week after I'd collected the beetles, I finally mailed them off. The exterminator called a few days later. "I'm not sure what kind of beetles they are—you'd have to talk with a lawn guy," he said. "Sorry!"

Whatever creatures are munching on my hostas are having a good old time, because I haven't had time to further investigate. When I walk up to the house at the end of the work day, I focus on the glorious blue hydrangeas and try to ignore the ratty plants, and that's just the way it is.

Monday, July 22, 2013

If my child could wake up without special needs

The news about scientists turning off the extra copy of the chromosome behind Down syndrome means that someday, gene therapy could treat the condition in the embryonic stage. Published in the journal Nature, the study has made headlines around the world. It's made an impression on many parents, including me.

Max has cerebral palsy, yet the idea that special needs should be "fixed" or cured is unsettling. At the same time, it's made me wonder what would happen if cerebral palsy were curable. If Max had never been born with it, if it were to go away tomorrow, he would be a completely different child than the one I know and love.

Max is running to the car, excited to go for a drive. I love the way he runs; it's not so much a forward-propelled motion as much of a side-to-side fast waddle, like a penguin on speed. It is so Max.

Max is pointing to a photo he's pulled up on his iPad. 
"Max, do you want a Cars 2 Talking Lightning McQueen for your birthday?" I ask.
"Yeah!" he says, happily.
"And are you having a bowling party?" 
"Yeah!" he says.
"And are you having a chocolate and vanilla ice-cream cake?"
"YEAH!" he says.
I love his "yes." It is so Max. 

Max is holding a French fry in his fingers. This is quite the feat, because it's an oversized soft one and not easy for him to grasp. He's hooked his thumb and pointer finger around it, and he's dunking it in ketchup and carefully bringing it to his mouth. He does it in this slow-mo motion. It is so Max.

Max is giving me a kiss, a big, slurpy open-mouthed kiss typically accompanied by a smile. It is so Max.

Max is about to go downstairs, on his butt. He is capable of doing this upright if he holds the rail and I hold his hand, but he feels more comfortable going down on his rear. I watch him descend, his hair flopping, arms raised for balance whenever he lifts his butt. It is so Max.

It's bedtime, and Max holds his hand to his mouth, fingers straight, and waves it back and forth. It's his sign for water. A bit later, he draws an arm across his body in a Napoleon Bonaparte-like gesture, his sign for "It's cold in here, turn the a.c. down!" The gestures are so Max.

"Ohhmmy!" I hear. It's Max, calling me from the basement where he's been hanging out with Sabrina. "Ohhmmy!" is my favorite word in the whole world. It is so Max.

The cerebral palsy is in Max's movements, mannerisms, gestures, stance, sounds. It does not define him, but it is an integral part of who he is, same as his little sister has her ways. While I sometimes wonder how Max would would move, sound and behave if he didn't have CP, in the end he wouldn't be the kid I know and adore without the CP.

But then, I think, I'm being selfish. Because the CP creates obstacles for him. I see all the time that the world isn't an easy place to navigate physically or otherwise for a kid with special needs, and it pains me and makes me anxious about Max's future. What I wish is that there were more research dedicated to treatment for the medical issues that accompany disabilities, including the muscle spasticity and even pain some children and adults with cerebral palsy have and the heart problems that can plague those with Down syndrome. I wish, too, that there were more acceptance of people with special needs so that they weren't made to feel so different.

Before I had Max, if you'd asked me whether I would have wanted to avoid the cerebral palsy, I would have unhesitatingly said yes. And now, would I make all of Max's muscles move fluidly if I could? Would I give him full range of speech? Yes, I would, assuming he'd agree. And this is where it gets utterly and completely befuddling. Because what I do not wish is for the boy I love to become some other child.

I will do whatever I can within my powers to pave the road Max walks on and make his path in life easier. But I love this kid, the one I got.

Friday, July 19, 2013

Special Needs Blogger Weekend Link-Up: Good summer reads

It's another Special Needs Blogger Weekend Link-Up, something to take your mind off the fact that it is approximately a bazillion degrees outside.

The idea

Link to a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: My Birthday Is Only 6 Months Away! Yippeee!

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, July 18, 2013

When your kid won't stop repeating something

For years, Max has enjoyed having us repeat favorite phrases of his, including "Max loves spaghetti with sauce" and "Max loves purple." And by "repeat" I mean approximately every fifteen minutes, and I am not exaggerating. His neurologist once told us it is his way of processing information. These days, I think it is his way of making sure he gets what he wants. And what this boy wants is what he calls a Cars 2 Talking Lightning McQueen. This thing

I think it may just be the last piece of Cars 2 merchandise he does not own.

Max has been talking about getting one of these for his birthday for the last few months. Unlike the origins of his purple fixation and spaghetti phase, I can trace the start of this obsession—it began when he found a YouTube clip about the toy. Now, he carries his iPad around with the video paused on a photo of the car. He regularly walks up to me, flashes the photo and says "Ahrs ooo!" ("Cars 2!") at which point I duly respond, "You want a Cars 2 talking Lighting McQueen for your birthday?" and then he says "Yeah!"

On occasion, he wants to talk about all the elements of his upcoming birthday party (drawing near! In December!)—the Cars 2 cups, Cars 2 plates, Cars 2 tablecloth, Cars 2 napkins, Cars 2 party hats and Cars 2 ice-cream birthday cake he will have. 

We have already purchased them, of course, given that his party is half a year away. He sleeps with the bag by his (Cars 2) bedside. Um, not the ice-cream cake. 

Here is Max expounding on the topic:

You'd think I might be weary of saying "Max wants a Cars 2 talking Lightning McQueen for his birthday!" and you would be right. Except every single time, Max responds "Yeah!" like he is hearing it for the first time, and his entire face lights up. So I'm not that weary of it. There was a brief phase in which he wanted us to wear the party hats around the house, but it mercifully passed.

The psychological effects remain to be seen. I mean, on me. The other day Sabrina woke me up by standing at my bedside and asking, "Mommy! Are we going to the pool today?"

"Cars 2 Talking Lightning McQueen," I murmured.

Dave and I sometimes tease him. "Max," one of us will say, "do you want a talking Mater for your birthday? How about a talking Francesco Bernoulli?" Or, worse, "Max, you don't want a Cars 2 talking Lightning McQueen for your birthday, do you?" Max doesn't much appreciate it, but we need the comic relief.

We have milked this obsession for all its therapeutic worth. The speech therapists and I try hard to get Max to articulate the "c" in "car" and "t" in "two." He writes out the letters of the phrase with his occupational therapist, and has a poster-size version on his bedroom door. You know, because we need the reminder.  

It reads, "Cars 2 talking Lightning McQueen for Cars 2 party." Surprise!

In case you are wondering why we have not yet gotten one for him, it is because we are worried that when we do our family will no longer have anything to talk about. OK, actually, it's because we know that Max is seriously enjoying the anticipation. In a moment of panic, Dave recently ordered one online since life as we know it would end if they ran out of them in December. The box is sitting in our basement, hidden in a box. And if you tell Max, you are in big trouble.

Meanwhile, Max has been telling us that he is saving up his money to help us buy a talking Lightning McQueen. The other day, he changed that to telling us that he is paying for the batteries. Smart kid.

Wednesday, July 17, 2013

What if William and Kate had a child with special needs?

What if you were a couple so excited for the arrival of your first child, much in the way we all once were?

What if you happened to be a Very Famous Couple, like Prince William and Kate Middleton?

What if things didn't go as expected?

What if your baby were born with a birth defect? Or Down syndrome? Or a visual impairment?

What if your baby ended up with cerebral palsy? Or autism?

What if you were at first crushed, but came to realize that even though you didn't get the child you imagined you still got a beautiful child?

What if William and Kate issued a press release about how thrilled they were with their wonderful baby, a baby who had special needs?

What if they helped people see how perfect a so-called imperfect baby can be?

What if people swarmed to buy the commemorative t-shirts and dish towels imprinted with photos of that royal beautiful baby with special needs?

What if William and Kate showed the world that having a child with special needs is not a tragedy?

What if they could influence people to stop treating children with special needs like lesser human beings?

What if this isn't about schadenfreude—no, not at all, not even a little bitWhat if this is simply about the fantastical thoughts that go through your head when you are mom to a child who was born with special needs and you are considering the pregnancy of a woman people worship. What if this is about wondering (constantly so, achingly so) what it would take for people to get that kids with special need should be seen as kids, not fragile creatures to be mourned or pitied. That our children have plenty of abilities, not to mention potential. That our children are as beloved as any others. That our children are as beautiful as any others.

What if?

Image: Flickr/tsaiproject

Tuesday, July 16, 2013

18 things special needs moms shouldn't feel guilty about

1. Not doing all of the exercises the therapists recommend.
Just not possible, even if you did nothing but therapy all day long. Ask your child's therapists to prioritize things for you—if possible, on a conference call. Encourage them to share ideas for making everyday activities therapeutic, from bicycling your child's legs as you change a diaper to making up funny noises on car rides. And then? Do your best and try not to sweat the rest. Loving your child up is plenty therapeutic right there.

2. Accidentally leaving the medication/EpiPen/other critical lifesaving treatment at home. Reminder: You are a mother of the human variety. It happens.

3. Thinking that you "caused" your child's disabilities.
You play and replay in your mind all the suspects from your pregnancy—you ate a piece of luncheon meat, tripped and fell, slept on your back, didn't get a C-section soon enough, freakout etc. Seek reassurance from your doctor, and if your doctor isn't the reassuring type find one who is. Also, get therapy if the guilt feels overwhelming. You have enough to deal with; beating yourself up won't do you or your child any good.

4. Girls night out!
If anyone deserves some fun, it is you.

5. Getting a mani-pedi.
If anyone deserves time to take care of her poor neglected nails, it is also you.

6. Feeling like you put your husband on the back burner.
So you forgot his name the other day. OK, maybe things aren't that bad, but given how consuming a child's special needs can be, some days there may not be a lot left of you. Date nights help. So does scheduling regular weekly times to discuss household and financial matters, so that these things don't consume your date nights. And never underestimate the power of little favors. (Use your imagination.)

7. Feeding your child junk food.
In the wise words of one mom, "No kid is going to die from an occasional Ho-Ho."

8. Losing it with the insurance company supervisor.
True, it's not the manager's fault the insurance company hasn't reimbursed you for claims since the Clinton administration—and it's not your fault that after 27-phone-calls-but-who's-counting, you finally erupt like Mt. Vesuvius. (See: "mother of the human variety.")

9. Having a job.
Like we have a choice about earning income for our families.

10. Giving up on redirecting/reminding your child.
Whether it's your child's persistent banging of knees against the kitchen table or humming, at times you run out of strength to say "Stop!" Go on, flee to another room or let your significant other deal. You can't always be on.

11. Feeling perturbed at family members for not getting it. 
It's genuinely maddening (and deeply upsetting) when they say things like "Oh, she'll grow out of it!" and, worse, "There's nothing wrong with her!"

12. Letting your kid zone out to the TV/iPad.
Sure, you do not want them glued to the screens for hours on end every single day of the week, but if on occasion you need a break or time with your spouse and your child is perfectly content to explore YouTube or watch Doc McStuffins, so be it.

13. Spilling to your friends.
If they are good friends, they'll be there to listen to you angst about your child and give you perspective, just as you are there for them. If nothing else, look at it this way: You are giving them valuable perspective on how much less complicated their own parenthood is in comparison.

14. Writing about your child with special needs.
It can be both amazingly cathartic for you and helpful to others. The limits are yours to set; it helps to consider whether your child will ever be mortified about anything he reads years from now. Or whether he'd sue you.

15. Getting bored during floor play.
It happens. Gasp!

16. Not being able to do much charity and volunteer work.
Having young kids with special needs pretty much takes all you've got to give. Maybe you can't get to the soup kitchen like you used to, but you can still donate goods, money or social media shares.

17. Accepting kindnesses from strangers.
If it's going to make your child more content and your day easier, why feel guilty?

18. Wishing your child didn't have special needs.
If there were a special needs mom who hasn't ever thought this, well, she is definitely no longer with us because she has been elevated to sainthood.

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