Monday, January 31, 2011

Meet our new Puppy

While I was at the Blissdom Conference, the kids acquired a fish. Not quite the addition to the family I'd been dreaming of while I was away, but still, a thrill.

A Siamese Fighting Fish is far less of a shock to come home to than a dog, which is what happened to my friend Jill at Scary Mommy when she went to BlogHer. Evidently, there is something about blogger conferences that inspires your family to run out and get pets while you're gone.

Sabrina's named him Puppy, which sure beats what the kids named our last fish: "Fish" (Sabrina) and "Ish" (Max). Hopefully, I won't send this little guy off to that big fishbowl in the sky. Already there was some drama today; it suddenly occurred to me at around 4:00 to ask Sabrina if she'd fed him that morning, just two pellets like she was supposed to. And then I was all wracked with guilt that it took me most of the day to remember that she was supposed to feed him. Thankfully, she did. Tonight, I caught her giving him more pellets. "He needs a bedtime snack!" she explained.

Max is mesmerized by Puppy and, miraculously, doesn't even mind that he's blue and not purple. He stands there and just watches him swimming around and around, despite Sabrina's charming habit of shrieking "DON'T TOUCH MY FISH!" Even if we manage to keep feeding him, the poor fish may drop dead of a heart attack.

I'm already thinking about who's going to keep reminding Sabrina to feed him (she is six, after all), who's going to change the water, who's going to be the one to shout "OH NO! PUPPY!" when we're halfway en route to the airport for our next vacation. It's not the responsibility, per se—it's just one more thing that I have to remember to do, because I am this household's central databank.

And now you are all thinking, This is the woman who wants a third kid?!

Sunday, January 30, 2011

Should we have a third child, continued: I got pregnant at Blissdom!


OK, I didn't really get pregnant at Blissdom, as there wouldn't have been time and besides, Mrs Chicken was my roommate. But that urge to have a third child was so strong my ovaries were throbbing. I literally tried to pick up every single baby who crossed my path. I think my friend Kim suspected I was going to try and take Cassidy, this munchkin, home with me. How's that for conference swag?


I am utterly and totally distracted by babies at mom blogger conferences. This despite the fact that there was much to be engaged by at Blissdom: Outstanding workshops and panels (and I'm not just saying that because I was a speaker); amazing women and yet more amazing women; performances by Chris Mann and Crystal Bowersox; much spontaneous trading of tips; plenty of random free chocolate. But then, there were the babies. Babies I cooed and gooed at and talked in a funny high-pitched voice to. Babies I was dying to hold. Babies, babies, babies.

I learned a new term at the conference: "geriatric pregnancy" (THANKS, KIM!!!), defined as a pregnancy in a woman over 35. (I know, shocker, I look 25, right? RIGHT?!). That doesn't scare me. The potential chaos of juggling three kids, one of whom has special needs, does.

Do it, my heart says. Just do it.

It's a crazy thing to do, says my brain. What if you don't have enough time for Max?

You won't regret it, says my heart.

Yes, it'll be good for Max, but did I mention life is going to get crazy? says my brain.

This is why, even though I've long been mulling it over, that should we have a third kid question remains in the air. And one of these days, I'm going to run out of time.

Look, says my heart. Just, look.

Friday, January 28, 2011

Special needs, tears and laughter at Blissdom

Greetings, y'all, from Nashville, where I've been ensconced in Planet Opryland (also known as the Gaylord Opryland Hotel) since Tuesday night, for the Blissdom Conference. There are about 600 bloggers here, most of them of the mom blogger variety. It's interesting, informational, fun, laughter-inducing. Also, tears-inducing: I've been meeting moms dealing with all sorts of challenges with their kids, ones they don't necessarily write about in their blogs.

I did a writing workshop on Wednesday (this actually did not make me cry), went to several panels, picked up some great kernels of information including:

Quora, an ever-changing collection of questions and answers created, edited and organized by a user community. I am telling you, DO NOT LOOK AT THIS if you have no room for any other time sucks in your life. It is addictive.

• Titles of post should never be more than 70 characters long or search engines won't find them, which means I should not ever title a post Max Is Still Obsessed With Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple and...Purple.

• This YouTube video, A Mom Talks With the Director of Special Education, is funny and too true (thanks to social media genius Kim Moldofsky for sharing).

The conference set up "tribes," to pair up people with common areas of interest. There's a green tribe, a design tribe, a travel tribe, you get the picture. I am the tribe leader for the Sexy Moms tribe. Oh, OK, I am the tribe leader for Special Needs. A group of us got together yesterday and shared stories and some of us cried a little. I think the Fashion tribe was the next table over and, oddly enough, none of them seemed the least bit wrought.

When I hear moms with younger kids talking about their children, it takes me back to that time and I well up. I know where they are, I know the pain they're feeling, I know the anxiety they have. In general, though, I'm at the point where I can talk about what happened to Max without crying...usually. But I lost it at the panel I was on yesterday afternoon, Advocates and Activists: Harnessing Social Media for Social Good In The Face Of Compassion Fatigue.

My co-panelists: Anissa Mayhew from Free Anissa (who's dealt with a child who has cancer and her own stroke and who is one of the funniest women I know), Ellie Schoenberger from One Crafty Mother (who's overcome alcoholism), and Ryan from Pacing The Panic Room (who created a kiddie CD, Do Fun Stuff, to benefit Smith Magenis Syndrome, which his step-son has). The moderator was Megan Jordan of Velveteen Mind, an exceptionally wonderful person.

I was already emotional by the time I started talking. Catherine Connor from Her Bad Mother did an introduction where she spoke of her trip to Lesotho, Africa for the Global Fund's Born HIV-Free program. She met with a group of blind children who had HIV; one of the girls sang a Beyonce song for her (scroll down Catherine's sidebar to see it).

Tears.

Meagan spoke of her home being completely destroyed by Hurricane Katrina and showed a picture of herself and her little boy standing in the footprint of his former room.

Tears.

I so didn't want to cry when I spoke, because part of the message I try to spread is that Max is not a tragedy, and that he shouldn't be pitied. But, damn, when I started talking about the list of stuff the doctors told us could lie in his future (he might never walk or talk, he could have mental retardation, he could have vision and hearing problems), I cried. In front of a roomful of people.

It passed, but once again, I was surprised by how my emotions hijacked me. These days, I can talk matter-of-factly about Max's cerebral palsy and his challenges. But eight years into his life, there's still rawness when I talk about his birth.

How do you react when you talk about what happened to your child or his/her diagnosis?

Wednesday, January 26, 2011

Top 10 Hazards Of Being A Mom Blogger (post rewind)



Hello, peoples. I'm in Nashville, sucked into the Blissdom Conference, so I'm sharing a relevant favorite post from the past.

Top 10 Hazards Of Being A Mom Blogger

1. Being called a "mom blogger."
2. Husband thinks you are neglecting him and the kids and makes remarks like "Enough with that blog thing already!"
3. You look at everything in terms of post potential—house catastrophes, male pattern baldness, dead hamsters.
4. Heart palpitations and sweaty palms when you can't come up with an idea for a post.
5. Kids? What kids?
6. Mother-in-law finds out you make jokes about her on the blog and wigs out. Dang! She knows how to read blogs?
7. Friends refuse to tell you things for fear they will turn up online. As if you would EVER tell that Fran is cheating on her husband!!!!!!
8. You pour your heart out in a post and get two comments. And one of them is from your mother-in-law. And she's mad.
9. Potential defamation suits from the kids down the road.
10. You tell me!

Tuesday, January 25, 2011

Kids With Special Needs Around The World: Ireland


I recently met Jen on Twitter; she's from Dublin, Ireland, and is a mom to three kids, one of whom has autism. She describes herself as "wife, taxi service, blogger, internet addict, head cook and chief bottle washer." Jen works part-time for Irish Autism Action and blogs over at The King And Eye, where she refers to her son as HRH: His Royal Highness. Please give her a warm welcome!

My son, HRH, is 3 years and 3 months old. He is a very gentle, loving little boy who babbles and chatters away at home. He even has a few words now. He is very shy with anyone apart from family members and finds it next to impossible to socialize with people so he retreats into himself. He is a funny little boy with a quirky sense of humor. He loves his big brother and little sister dearly and it is wonderful to watch them interacting together, something we thought we wouldn't see for years. He also has Sensory Processing Disorder along with his autism.

HRH was diagnosed with autism at 23 months. We noticed him regressing, losing skills and speech, from about 14 months on.


Here he is on his first birthday; the top photo is on his second birthday. You can see the difference, can't you?
We had a "lightbulb moment" when he was 18 months old; I called his name and he didn't respond. That was a breathtaking, frightening moment for us, but in hindsight it was a blessing.
In Ireland we don't have early autism screening. If a child doesn't meet the normal developmental milestones, it may be picked up by age two. However, if a child meets normal developmental milestones for the first 12 to 18 months of their life, as my son did, it will often be missed and go undiagnosed until 3.5 or 4 years of age. Parents love and accept their children as they are and without guidance from our wholly untrained professionals, there is no way to catch the autism earlier.
If we had waited on our Public Health System to diagnose HRH, I can guarantee you we would still be waiting. I am an impatient woman and we forged ahead ourselves, thankfully. Because of this my son has been having intervention since 23 months old and is blossoming. He has had ABA therapy since he was diagnosed and also blocks of SLT and OT. Autistic children in Ireland are not entitled to apply for financial assistance with ABA therapy until 2.5 years of age. The comment we have most often heard over the last 16 months is "Oh, he is the youngest child we have ever worked with."
We are not entitled to Community Therapy Services (local speech and occupational therapy services) because he has autism. Community services are not for children who have a diagnosis from a specific list of disorders, but for short term assistance with development delays. HRH goes to an autism-specific service provider; it took a year to get that service. The autism services are fine for now, but if HRH goes to a mainstream school later on we will not be entitled to those services, but we won't be entitled to the Community Services either because he will still have autism. So if we work hard now, make great progress, it will come back to bite us later on. That just seems very messed up to me!
Attitudes to disability in Ireland are of the elephant in the living room variety. Everyone can see the elephant, you can't miss it, but nobody knows how to address it or speak up. There is a lack of confidence here and people feel uncomfortable in broaching the subject so people just ignore it until their own lives are touched by disability.
I have read so many blogs from so many wonderful parents around the globe and there is a theme running through all of them. People with special needs do not get anywhere near the kind of help they need. There is no looking to the future and investing in our special needs children now so that they can become valuable and contributing members of society later on. Any help that is available is mired in a sea of red tape that adds extra stress to an already tired parent. This isn't just in Ireland, this is everywhere.
One at a time we need to fight for our children and change the attitudes of those who hold the purse strings. We can do it, we have to do it. Otherwise what lies ahead for our little sweethearts?

Monday, January 24, 2011

Raising kids with special needs: mushball vs. tough-love parenting



There are times when I'm not sure how to handle certain special-needs situations, like on Saturday, when I found out kids had been mean to Max. (Thanks again, everyone, for the support and advice). And then there are times when I'm completely confident about what I'm doing. I know, if I know anything, that I need to keep pushing Max beyond his comfort level and not give in when he wants me to do stuff for him. But then, there are two parents in this relationship. And one of us is a mushball. Hint: It's not me.

I went to Max's parent-teacher conference last week. Lots of good stuff was said: He's beginning to grasp addition, his reading skills are also developing, they're planning to use his iPad a lot more in class, his speech therapist is going to help us start programming sentences into it, the physical therapist will continue working on life skills (recent score: Max is now climbing in and out of bed!), the occupational therapist is going to help us figure out utensils and cups that will encourage independent eating, ideally in the color purple. Of course.

"Does he always eat lunch on his own?" I asked his teacher.

"Yes!" she said, looking surprised.

At home, Max still tries to get me to feed him. He points to his food and at me, and gives me this killer smile. "Max, I'm not feeding you—you can do it yourself!" I'll say, firmly. Sometimes, I will literally turn my back on him to busy myself with dishes or poke around in a cabinet; when I turn back, he's usually shoveling food into his mouth. This is not what happens with Dave. "ADDDY! ADDDY! ADDDY! ADDY!" Max will chant, knowing that Mushball Dave will cave sooner or later and feed him. And cave he does.

At the conference, we talked about potty training, too. Max will go at school, but he is not into it at home (despite the fact that at this time last year, he made a big show of going potty). This weekend, at the school nurse's recommendation, I ordered Max a purple notebook and some purple smiley face stickers, to see if the sticker system might persuade him.

"I think I might want to get his Dad a sticker system too," I told the nurse, only half joking. Dave needs motivation to not give in to Max. He's a softie with Sabrina, too. I am Mommy Hard-Ass, the one who doesn't let the kids buy the toy at the store, have chocolate milk for breakfast or get out of picking up their clothes off the floor. (Although it is tricky to enforce that last one when you are a grown-up who leaves his clothes on the floor, not that I'm mentioning any names).

With Max, it's so important that we continue to encourage him to do things on his own. It forces him to learn, to use his hands, to feel more confident in his own abilities, to develop. Dave and I have talked about this and he's gotten somewhat better but he remains Mushball Dave. Which is one of the things that first made me fall in love with him, this sweetie of a guy who was so easygoing and good-natured and eager to please. I-r-o-n-y.

Although when Max looks at me with those big eyes of his and says "ORE!"—as in, I want more chocolate ice-cream even though I've just eaten a humongous bowl of it—I can never turn him down.

OK, who's the mushball parent and who's the tough-love parent in your house? Or are you one and the same?


Sunday, January 23, 2011

Siblings with disabilities: Her brother's keeper


I had a roller coaster kind of Saturday, the kind of day where you're both happy and despondent about your child.

Saturday afternoon, Max and I took a bunch of purple bandanas (there they are above) and two yards of purple terrycloth (thanks, fabric.com!) over to a local sewing genius who's made curtains for me. Jaye's going to whip up some absorbent bandanas Max can wear around his neck, to catch the drool, which doesn't seem to be easing up. A few weeks ago AZ—a young woman with cp who blogs over at Life and Times Of A Teenager With Disabilities—and I were on Facebook, and she messaged me to say "No offense, but Max is too old for bibs." She'd seen one in a recent photo. I knew she was right. Max is beyond psyched to try the ur-ul bandanas. When I pulled them out of the mailer they'd arrived in, he made that happy squeal I can never get enough of.

Saturday night, the gym where Sabrina takes gymnastics had a parents night out; you drop the kids off for a few hours. Sabrina's been sick but she begged to go, and we gave in. Dave and I had dinner, then did some shopping. When we picked the kids up, Max was running around, laughing his head off. The girls in charge said they'd both had a great time.

Cut to bedtime; I'm lying down with Sabrina in her bed, because she was complaining her tummy hurt.

Me: "What did you do at the gym?"

Sabrina: "We played games and ate pizza and jumped on the trampoline and I made new friends!"

Me: "How about Max?"

Sabrina: "He was friends with ALL the kids!"

Me: "What do you mean?"

Sabrina: "He was pretending to be a monster and scare the kids and they were all running away from him."

Me: "So they liked that?" Sometimes, Max does the monster thing when he's around new kids, and they either don't like it or actually get scared if they're young. It is not his most endearing habit.

Sabrina: "Some kids were making fun of him."

Me: "Which kids?"

Sabrina: "ALL the kids."

Me: "ALL the kids?"

Sabrina: "Just kidding!"

This is where extrapolating information from a five-year-old gets really frustrating, and this is also where you start questioning whether you should be pressing your child for this sort of information. But I couldn't stop.

Me: "Sabrina, really, what happened?"

Sabrina: "There were kids making fun of him."

Me: "What were the kids saying?"

Sabrina: "They said he doesn't look like other kids!"

Me: "What were they talking about?"

Sabrina: "They said he's a droolie."

Me: "Yes, sometimes Max drools, it's something he does."

Sabrina: "And they said he eats baby food too!"

Me: "Did you stick up for him?"

Sabrina: "I telled the girl!"

Me: "That was good. You can also tell the kids your brother is a great kid!"

I really wasn't sure what she should say to kids who tease. And I was getting distressed at the thought of kids making fun of Max, but kept my tone cheerful and carried on.

Me: "Max does some things kids his age don't do, but he also does a lot of the same stuff they do! Like he loves to play. And ride a bike. And eat chocolate ice-cream!

Sabrina: "And he likes to laugh! And play with trucks! And he can roll on the floor at gym!"

Me: "Yes!"

Sabrina: "I don't want to talk about this anymore."

I knew she was processing it all. She's trying to understand her brother and how he fits in, and how she fits in when other kids say things about him. At least Max doesn't notice, for now.

I'm still trying to figure things out, too. I hope I said the right words to Sabrina, and that I didn't unnerve her by questioning her. I ache for her to stick up for him. And I so want other kids to treat him like one of them. It's painful to think of him being teased.

For years I've heard about Sibshops, a group that runs workshops for siblings of kids with special needs. It just so happens that this week, a reader emailed me to say she is working on opening up one not too far away from where we live. Sounds like something that could be great for Sabrina.

Meanwhile, I think I could use a workshop for coping with teasing...or some advice from parents who have dealt with this.

Giveaway: Yo Kids


We eat a lot of yogurt in this house; the kids think it's a treat, even though it healthy (please, nobody tell them). Sabrina would down the entire eight-pack of Squeezers at once if I let her. We do the YoKids kind, which is organic.

The Yo peeps have two prize packs to give away. Each one, worth $25, includes:
• Two booklets of coupons, each good for one YoKids multipack or one package of YoKids Squeezers
• A YoKids cape
• An Eric Carle growth chart
• A Stonyfield Farm activity book

To enter, leave a comment below about your favorite flavor(s) of yogurt. Mine: peach and mango honey.

Bonus entries:

• Like Love That Max on Facebook
• Follow Love That Max on Twitter
• Tweet about this giveaway (one a day). Here's one for ya: $25 YoKids giveaway—freebie coupons + an Eric Carle growth chart—from @LoveThatMax, ends 2/1, http://tinyurl.com/67mx7t9

You need to leave your email if yours is not visible on your blog because my telepathic powers are on the blink.

Good luck!

Saturday, January 22, 2011

Parenting kids with special needs: the best medicine


Last night, I had the silliest night I've had in awhile. A neighbor invited me to a game night she regularly has with a group of women. I basically didn't stop laughing for three hours straight.

We snacked on various desserts (butterscotch Rice Krispie treats! Freshly-made cannolis! Mini peanut butter cups from Trader Joe's!) and played Scattergories. For those of you not familiar with it, everyone picks a pre-printed list (say, #10) and you each get a copy of it. The list features different categories—things in a souvenir shop, terms of endearment, kinds of dances—and then a player rolls a gigantic dice with letters of the alphabet. Once the letter's picked, the timer is set and you have to come up with words that begin with that letter for every category.

There was plenty of heated debate (does "D'oh!" count as a famous phrase?) and constant cracking up. One round, there was a "d" on the table and a woman wrote "doodie" as her answer. The category: things you find in the Wild West. I can't tell you why, but I laughed so hard I had tears coming out of my eyes. Max would surely have appreciated it, too.

Hanging out with friends and laughing feels so good; it's not something I take for granted. In some ways, I think I'm still making up for the sad year, that year after I had Max when I had a constant and strong undercurrent of grief running through my veins. I went from being a perpetually cheerful, social person to someone who cried like a leaky faucet and didn't want to be around people. It wasn't just depressing, it was disconcerting. Who was the person I'd become?

It passed. It really and genuinely passed. These days, I'm not exactly the same person I was before I had kids—what parent ever is?—but I'm back to loving life (well, most days) and being my old social butterfly self.

A fun time with friends: another one of those things that make parenting kids with special needs easier. Come to think of it, I'm going to try to organize a get-together for readers/bloggers in the NY area at some point in the future. How amazing would that be? I'll bring the mini peanut butter cups!

When's the last time you had a good time with the girls?

Thursday, January 20, 2011

The Insanely Simplified Guide To The Blissdom Conference

Next week, I'm headed to Nashville to speak at the Blissdom Conference. I'll be talking about harnessing social media for social good with some amazing women, doing a professional writing workshop with yet more amazing women, serving as the special needs tribe leader, and also showing off my world-renowned baton-twirling skills. OK, not that.

I've been seeing some newbies on Twitter getting a wee bit anxious about what it's like to be at Blissdom, so I thought I'd share some helpful advice.

Clothes: Bring some.
Clean underwear: Recommended.
Sequined black gown: Save it for the Oscars.
Shoes: Your call.
Pajamas or sweats: A considerate thing, since your roommate might not appreciate your sleeping in the buff. Unless she does that too. In which case you might consider forming your own tribe.
Toiletries and makeup: Looking and smelling good may increase your odds of not looking or smelling bad, according to the Surgeon General of The United States.
George Clooney: Yes, bring him if you can.
Pens and paper: So 2001, but a good idea. Come to think of it, there is a really great How To Move A Pen Wisdom Workshop on writing, and though it does not specify that a pen is required, one might be. Play it safe.
The kids' pet hamster: Nah, he'll be fine, but then again he might benefit from the Vlogging or Advanced Branding Wisdom Workshops.
Integrity: Necessary (duh!) but there's no need to bring extra because there is a "Integrity & Strategy" panel about having "unflappable character and consistent core values as a key to implement bliss" and word is that either "integrity" or "strategy" will be in the swag bag.
Snacks: Not necessary if you like to chew on your pen (see above).
Business cards: Yes, definitely, so you will have one to hand to George Clooney in case someone decides to bring him.
Your child's IEP (Individualized Education Plan), for my special needs peeps: Bwahahahahahaha
Your concerns: Leave 'em behind. This is an incredibly warm and welcoming conference. You will learn lots, you will learn stuff you didn't even know you needed to know, you will make many new friends (some of whom may or may not be George Clooney), you will be highly entertained and—bonus!—your family will come to understand that houses do not magically clean themselves.

Got even better Blissdom advice to share? I am so very sure you do. Feel free to link up to your Blissdom post; just enter the title of the post and the direct URL.

You're welcome. I am nothing if not helpful.

Bringing up kids with special needs (and driving in the dark)


Tonight I was driving on the highway, enjoying the ride. Dave is usually at the wheel on weekends, and mostly I'm home weekday nights with the kids, but every once in a while I'll slip out after they're asleep to do errands. There is something incredibly relaxing about cruising along in darkness lit up by the glow of headlights. Especially when you're alone and nobody's shouting "I'm thirrrrrrrrsty!" or "He's hitting me!" I get a lot of good thinking done, and some not-half-bad singing. Classic rock or '70s.

I started thinking back to when I learned how to drive, at 17. Back then, being on the road at night scared me. I was fine during the day and had even passed my road test the first time (despite the fact that I almost hit a pedestrian when I was backing into a parking spot, but the instructor had been writing notes and didn't see the guy leaping out of the way, which sure taught him to never again walk behind a car labeled DRIVING SCHOOL). When I was out at night and peering into the blackness, though, I found it hard to get my bearings. It felt out of control. It took me months to get used to seeing things.

It suddenly occurred to me how similar my journey has been with Max. In the early years, life felt the exact same way—scary, impossible to get my bearings, out of control. And then, I adjusted.

I'm sure as heck not on cruise control, but now I am able to see.

Do you know what I mean?


Photo/doctorious

Tuesday, January 18, 2011

25 Things That Make Special Needs Parenting Easier

1. Your child's smile.

2. Being unafraid to say "no." As in, "No, twice a week of speech therapy is not enough" and "No, I don't think my child can handle that" and "No, I am not Angelina Jolie, though I do bear a striking resemblance to her, I know."

3. Finding doctors who are good but also kind, supportive and non-jerk-like.

4. Trusting your gut.

5. Accepting that you are not a crappy parent if you don't do every single thing the therapists ask you to.

6. The kindness of strangers (but not the pity).

7. Peach Snapple. Or Diet Coke. Or the occasional glass of wine. Or whatever powers you through.

8. Silly time that cracks you both up and helps you remember although your child may have disabilities, he is not at all fun impaired.

9. Knowing that you are not alone. Blog, comment, post on a message board, join an e-loop, start a support group. There's major comfort in connecting.

10. Having at least one babysitter both you and your child are truly comfortable with.

11. Having a good cry as needed, then moving right along.

12. Takeout. Diapers and prescriptions by mail. Not ironing. Whatever you can do to have fewer to-dos.

13. Roping in all the therapists on a conference call at least once a year.

14. Believing—truly believing—that there is something wrong with the people who stare at your child, not your child. That mindshift alone will save you many hours of grief.

15. A looseleaf binder with Important Papers organized in whatever way makes sense to you. Yes, you will need a hole puncher. Bonus: They're good for getting out frustrations.

16. Time for yourself, out of the house. Repeat after me: This is not a luxury—it's a necessity.

17. Going with the flow. So your child won't leave home without his stack of 20 purple paper cups? OK, then! If it makes him comfortable and it won't get you arrested, do it.

18. Not looking too far into the future when your child is very young.

19. The passage of time. Few things give you better perspective.

20. Having a handy catchphrase you can use when people ask questions that unsettle you. Person: "Is he talking yet?" You: "Yes, in his own way!"

21. Making playdates with other kids who have special needs. Good for the kids, good for you.

22. Asking other parents and experts advice for resources and things—the adapted chair for the dining room table, shoes, apps, whatever—that will improve the quality of your child's life, and therefore yours as well. Also, asking therapists to adapt things in your life (like the phone) so your child can better use them.

23. Your child's kiss.

24. Hope.

25. You tell me.

Monday, January 17, 2011

Two kinds of milestones, all kinds of amazing


Sabrina walked into my bedroom this morning with an armful of Pull-Ups and announced that she was done wearing them at night.

"Are you sure?" I asked. When we were at the doctor a few weeks ago for her annual checkup, I'd asked if it was OK that she was still wearing them, given that she's almost 6, and he basically said whatever worked was cool.

"Yes!" Sabrina said, emphatically. "I'm not wearing them anymore." She's like me in that way: Once she sets her mind to something, she does it.

I'm happy, and excited to stop shelling out money for her diapers, but I'm kind of melancholy about this, too; it's the end of a phase in her life. Max, meanwhile, is still in Pull-Ups for the unforeseeable future. When he gets out of them, we will be having a major celebration—I am talking diaper-burning party. OK, just one diaper will be burned, and then we will donate the rest to a local shelter, like I'm planning to do with Sabrina's extras.

Sabrina's milestones have come upon us fast and unexpectedly; one day she was pulling to stand and the next week, she took her next steps. One day she was babbling away in that baby language that sounds like she's speaking perfect Swahili and the next, words came. One day she decided to dress herself. One day she brushed her teeth by herself. One day, she made her bed (although, sadly, that's not a habit). These milestones delight with their unannounced arrival and the speed at which they descend upon us. We're thrilled, yet we take them for granted.

Max's milestones have been wholly different. Most of them have happened after serious effort on his part, his therapists' and ours. They're victories, each and every one, doubly wondrous because there was no guarantee he'd achieve them. And the milestones that spring up without any doing, like when he recently started rhyming? Those seem downright miraculous.

That's the mix of milestones we experience in our family. And they're all pretty amazing.

What sort of milestones (or mini-stones) have you been seeing lately?

Sunday, January 16, 2011

We are so married (and other updates)


As you can see, Dave and I got each other the same exact cards for our anniversary. This can only mean one thing: We are SO married. Also, we are both the types to reach for the biggest cards at the card store. Hmmm.

Dave's present was carted away (alive and kicking) by the local exterminator. Felicia, next time we will try your remedies but we had to act fast, given that we were going away and Judy Doodie, kind as she is, wasn't up for babysitting the squirrel, too.

We had a wonderful time at The Water Club in Atlantic City. My threshold of expectations was admittedly low; I just wanted to sleep late in a comfy bed. I only made it till 9:30 a.m., but it felt damn good. Saturday afternoon, we did nothing but lounge near the pool (on the 32nd floor), read magazines and stare out at the view. Heaven. Then we had a memorable dinner at the Borgata's Izakaya Japanese restuarant; sushi is one of my favorite foods, and if I ever die of mercury poisoning I hereby leave this blog to all of you. As well as all the squirrels in our home.

We are not big gamblers, although I'm happy to sit and play blackjack for a couple of hours; Dave prefers roulette. I play the low-end tables, so we still have enough money left to do things like paying people to escort rodents out of our home and getting Max a haircut.


Which we finally did after we got home. I was afraid someone here was going to report us for child neglect.


In other news, Sabrina's developed an interesting habit of hiding under the Snuggie with Max's iPad. But we are on to her.

Hoping you all got some sort of break this weekend, too. Or that at least you had no need to call an exterminator.

When's the last time you and your husband got away for a couple of days without the kids?

Thursday, January 13, 2011

I got my husband a squirrel for our 10th anniversary

A squirrel (not necessarily alive) most definitely isn't what Dave is expecting as a 10th wedding anniversary present. But, surprise! It arrived this morning. I'm not sure how it got here, though it definitely didn't come from Zappos, like the majority of deliveries to our home.

I heard some weird sound coming from the attic. Maybe, just maybe, a big branch on a tree near the house was brushing against the roof? I am all about homeowner denial. But, no. There was clearly something skittering around the vent in Sabrina's room. I was too chicken to even look up, for fear I'd see a pair of beady eyes staring down at me. "GO AWAY!!!" I cleverly shouted, which did make the skittering stop...for, like, three seconds. Then, scratch, skitter, scratch, skitter, skitter skitter skitter.

Dave was out dropping off Sabrina at school and picking me up an iced coffee, which he does every morning throughout the year. Meanwhile, I've booked a weekend getaway to Atlantic City's Water Club and a "deep-tissue massage" for him. Dave operates on a week delay for reading this blog, so I'm not giving away any surprises; I am quite sure he is going to love his squirrel.

This is our marriage, filled with moments of sweetness and fun but also a whole lot of tasks, to-dos and surprises—some life-changing, some of the four-legged variety (or two-legged). Obviously, once kids come into the picture partners have to balance out couplehood, parenthood and life. We just have a bit more to manage because of the extra responsibilities, and occasional stress-outs, that come from having a kid with special needs. Some weeks, there's not a whole lot of "we" time, try as we might; some weeks, we're just too wiped to even try. But this weekend is all about us; my sister (aka Judy Doodie) and brother-in-law are babysitting (eternal thanks, guys).

The neighborhood exterminator came by late in the morning. He couldn't find a hole in the attic where a squirrel might have crept in, and there haven't been any scampering sounds. One of our neighbors, Todd, suggested that a mounted squirrel could be an even fancier anniversary gift, but I am not into DIY taxidermy, nor am I sure how that would look in our Pottery Barned living room, so we'll just have to wait and see when and if Dave's 10th anniversary present makes another appearance.

Do you like the name "Sherlock"?


Happy Anniversary, honey. I love you even more now than I did then.


Squirrel pic: Kevin Law

Wednesday, January 12, 2011

He's on the charts, and I don't care

For the last year, I've been trying to fatten Max up. OK, not make him a porker or anything; it's actually good for a kid with cerebral palsy to be light on his feet. And because I still have to pick him up on occasion—to help him up stairs, or to change him—it's a good thing for me, too. Max still has the pinchable cheeks he's had since he was a baby, but he'd gotten so scrawny that I'd cringe at the sight of his ribs poking out when I'd give him a bath. The doctor wasn't concerned, but still.

Evaporated milk in his cereal, olive oil on his spaghetti and an indecent amount of chocolate ice-cream seem to have helped; Max has been looking more filled out. We went for his annual appointment recently. Max weighs in at 45 pounds—a nine-pound gain from last year.

"He's on the charts again!" the doctor said to me.

"What?" I said, distracted by my excitement over the weight gain.

"His weight had fallen off the charts for the last few years, but now he's back on—he's in the fifth percentile," the doc told me.

"Interesting," I said.

In all honesty, I have little interest in any chart that compares Max to other kids. It's a defense muscle I've built up over the years, and it's pretty strong now. Max is healthy in his own right; that's all that matters to me. I don't really care how he ranks.

Although I do wonder whether his crazy mop of hair accounts for any of the weight gain.

Tuesday, January 11, 2011

Monday, January 10, 2011

The shooting of Rep. Gabrielle Giffords and the crapshoot of brain damage


When I first heard Rep. Gabrielle Giffords had been shot in the head, I was shocked and saddened. How could this have happened? Why? Whywhywhy? Next thought: I wonder what kind of brain damage she'll have. I hope it's not too devastating.

As of today, she remains in intensive care, unable to speak but responding to doctors' inquiries by moving her fingers.

Exactly where the bullet zoomed through her brain could mean the difference between whether Giffords will be able to walk and talk again. It will make all the difference in her cognition, her ability to use her hands and fingers, her ability to eat and even sleep.

Brain damage is a crapshoot.

I know something about brain damage because of Max's stroke. Crapshoot: Max had a bilateral kind, so both sides of his brain were affected. Crapshoot: His brainstem, which is critical for functions like breathing and movement, was spared. Crapshoot: So were his basal ganglia, also vital for moving as well as learning.

Crapshoot: That my child had a stroke. That Giffords was shot. That six people died that day, including Christina Taylor Green, the nine-year-old who'd gone to the meet-and-greet because she was interested in politics.

I've been thinking about what the future holds for Giffords. And I'm desperately hoping luck lends a hand.

Sunday, January 9, 2011

Breakthrough weekend: this is what's encouraging Max to talk

It started Saturday morning. The bathroom on our ground floor was on the verge of being condemned by the Department of Health, and since it's not a self-cleaning kind and Dave is not a self-cleaning husband, something needed to be done. "Mommy's going to vacuum the bathroom," I told Max. He flashed me a huge grin. Then he pointed to the vacuum and to the bathroom. It took me a second. "They rhyme!" I said. "Bathroom and vacuum!"

"EEE-YAH!" said Max. ("YEAH!")

A couple months ago, he'd recognized that my sister's name, Judy, rhymed with doodie (her childhood nickname) but we haven't heard rhyming since. For the next half hour, though, Max and I walked all around the house, him carrying a purple wand that he used to point to stuff and we made rhymes. Sometimes, he'd say the word and I'd add a rhyme; sometimes, he'd do it. Window and Play-doh! Floor and door! Brown and down! Truck and duck! Bus and us! Bed and red! It was totally amusing him and simultaneously cracking me up and amazing me. Most of the time, the words weren't intelligible, but he was trying so hard.

The speech therapist came over for her 11 a.m. appointment and was totally impressed. Phoneme awareness—recognizing the different units of sounds that distinguish words—is the root of reading and very key for speech. Sabrina went through this stage, too, about a year ago. Now it's Max's turn.

Max and I did the rhyming thing in car trips, too: Sky and hi! Blue and new! Tree and me! Snow and go! Snow and NO!

There's one basic truth I've learned about speech therapy or anything therapy: it works best for kids when it's fun. And rhyming is most definitely fun, if addictive.

"Dave!" I said as he heated up dinner tonight.

"What, hon?" he asked.

"Dave! Wave! Save! Rave! Brave! Enclave!" I said, gleefully.

Max totally cracked up.

This is all pretty awesome.

Saturday, January 8, 2011

Mommy crap that erodes my brain


We got an invite the other day for a birthday party for a kid in Sabrina's class. February 6, at 1:00 at a local gym. Hmm. Why was the date so familiar? Oh. Because it was the same day as Sabrina's party. At the same gym. At 3:00. Organized Mom had gotten the invite out earlier than me.

Two birthday parties in a row with the same exact gym session (they always do the same one for parties)? Two parties in a row with pizza and birthday cake? Not going to happen.

I called the gym. The woman I spoke with said she'd change up the routines "slightly." That didn't sound so great. "Can I speak with the manager?" I asked. "I am the manager," she said. We spoke for another five minutes and she finally agreed that once she knew which college kids were scheduled to run the parties, she'd talk with them.

I emailed Organized Mom, who is planning to serve pizza and birthday cake first. Then she'll do the gym class, so at least there would be some chunk of time between chowing down. Now I have to figure out what sort of stuff to serve that'll make Sabrina and a bunch of kids happy that's not pizza and birthday cake.

I can't believe I'm wasting brain power thinking about this stuff, but I am because I'm kind of stumped. And because Sabrina's been talking about her birthday party for about six months now. We spend a lot of time doing special stuff for Max, so I want this party for her to feel really special.

Ideas for what to serve? Please share and I'll present them to boss lady (aka Sabrina).

Thursday, January 6, 2011

A boy and his ur-ul balloons


Eight years into being Max's parents, we still go overboard with the toys, games, books, whatever. OK, we're that way with Sabrina, too, but there's more pressure on getting Max stuff that will encourage him to use his hands and his mind.

Of course, like any kid, the most basic, simple playthings bliss him out.

We visited my sister the other day. She had balloons left over from my niece's first birthday party and a helium tank. Woo hoo! THREE PURPLE BALLOONS. Max was ecstatic. He squealed.

Max, by the way, continues to refer to himself as Ur-Ul Max. If you say "Hi, Max!" he will shake his head at you and say, "Ur-Ul Ax!'

Do you think the Social Security people would let me put "Purple Max" on his card? Should we get the license plate? Hmmm, maybe a t-shirt will suffice.

Also happy-making: Sabrina offered to tie the balloons to his wrist, and she didn't even have an ulterior motive for being sweet to him, although going home she squirreled away all the rest of the balloons in the minivan. She has several hiding places there; the pocket of the armrest in the third row has a bazillion Silly Bandz. I don't think this qualifies her for Hoarders or anything, but we're keeping on eye on that one.


What sort of basic stuff amuses your kids?

Wednesday, January 5, 2011

The other man in my life


My dad celebrated a birthday today (some of you may remember him as the man with the ganja hat). I called him at home, hoping hard that he'd know who I was. So far, he hasn't forgotten, but it's possible. He has a slow-progressing yet debilitating disease that eats away at his memory and makes his hands tremble and his legs crumble beneath him.

"Hi, Daddy," I said. I still call him that sometimes. We spoke for a bit. He sounded frail, but OK. And he laughed when I told him I was going to buy him a box of Twinkies for his birthday. It's been our joke since I was a teen; he's always been a health food nut, and Twinkies are his idea of evil incarnate.

My dad's disease kicked in right around when Max was born. Over the years, I've watched him grow weaker, his muscles no longer working the way he wanted them to, as Max struggled to make his own muscles do what he wanted them to. Sometimes, seeing what my father was going through made me angry about what had happened to Max; how was it possible a little kid could grapple with the same physical problems a man in his eighties was? I've had the same thoughts over the years anytime I've heard about an elderly person having a stroke, as Max did when he was born. A stroke is what's supposed to happen when someone's lived a good part of their life, not at the start of it.

The gap between Max's abilities and my father's has widened as Max has progressed and my Dad has gotten less able-bodied. I feel lucky he is still around, and lucky to have been raised by him. He used to constantly read newspapers and clip articles he thought would interest me, and was always finding fun activities for our family to do on weekends. Once, in college, he took us all to Vegas, where he accidentally got us tickets to an ice-skating show...with topless showgirls. Try watching that with your parents sitting next to you (Dad was too cheap to waste the money and leave). They had us later in life but even in his early fifties, my dad would race me down the block—and he'd want to win.

Tonight, Max sat on his bed and read a Thomas book to Dave, Go Train Go. He knew the words "Go Train Go" on the cover and then he prattled on, flipping the pages (great use of one finger!) and articulating what he thought the book said. My dad would have been really proud.

Happy Birthday, Daddy.

Tuesday, January 4, 2011

The f-word for parents of kids with special needs

Today, I got an email that I couldn't stop thinking about. It was from a mom on an e-loop I'm part of; she's been lobbying on behalf of special needs families for years, and she invited us to attend a meeting happening next week. It's about policy plans for our state's Division of Developmental Disabilities. There will be a lot of talk about the Community Services Waiting List, which is what you have to be on in order to be eligible for housing for the disabled, as well as other support services.

The "f" word in my life is Max's future; it's not something I talk about a lot. On purpose. Looking that far ahead unsettles me. It's what I had to learn to stop doing when Max was a baby, because the more I kept trying to envision what his future might be like, the more anxious and depressed I'd get. And so for years, I've set my sights on the present of Max and what he is doing, rather than what he might do someday. It's been a good thing for both of us. A healthy thing.

I don't have my head buried in the sand. We are in the early stages of setting up a special needs trust for Max. But the thought of Max in a home for the disabled? It makes me cry. I am tearing up as I type this, and I've had to stop a couple of times. My mind goes to bad places when I think of it.

Max in need of a special home?

Max without me and Dave?

How could we do that to him?

Who would protect him and take care of him like we do?

No, he could never go to a home.

But what if it were the right thing for him? He'll need to be independent.

Would he be able to change his clothes himself or would there be someone to help him?

Would he be able to feed himself?

What kind of friends would he have?

What do those homes look like on the inside, anyway?

What kind of job would he get?

How could I not kiss him every day?

Would it be weird for me to visit every day?

And so on and so on. My mind spirals off into all sorts of irrational thoughts. And I know they are mostly irrational, given the fact that Max is eight years old and still has lots of growing to do and progress to achieve.

There is a home for adults with disabilities near a coffee shop we used to go to before it closed. A group of residents would come in sometimes, a mix of adults with mental disabilities and Down syndrome. I'd spy on them the entire time from behind my cup of coffee, watching them talk, laugh and enjoy themselves, as friends do. Sometimes I'd marvel at their camaraderie and feel glad for them. Sometimes I'd tear up as Dave would say "Awww, honey, don't" because I kept picturing Max as one of them.

The truth is, I'm not yet at the special-parent developmental stage where I can think of this. It's still too painful. And yet, what's helped me help Max over the years is researching things that could benefit him. I know I should attend the meeting. From what I've heard, the waiting list for housing is very long, he'll probably need to get on it sooner rather than later, and it would be good to at least learn about it.

I asked Dave if he thought we should go. "Yes," he said, without hesitation. "Let's educate ourselves." He doesn't get emotional about stuff like this.

So I am dreading it, but I'll put on my big girl panties and go.


Photo/Carl Wycoff

The perils of a know-it-all sister


Max has been doing great with his sight words. His teacher sent home a batch printed on index cards, and when we read books and the words come up Max points to the card and says the word.

Sabrina grabbed the index cards the other day and started testing Max. She pulled out "go" and showed it to him. Word, Sabrina is not that far along with reading.

"What's this word, Max?" she demanded.

"Oh!" said Max, and I knew he was saying "go."

"Nooooooo, Max," said Sabrina, who had no clue what the word was.

Then she pulled out "said."

"Max, what's this?" she asked.

"Eh!" said Max. I knew he was saying "said."

"Nooooooo, Max," said Sabrina. "And this?" she asked, showing him the "play" card.

"Aaaaay!" said Max. ["Play."]

"Noooooo," said Sabrina.

"ESSSSSS!" ["YESSSSSS!"] said Max.

OMG. Intervention!

Monday, January 3, 2011

The power of progress, no matter how "small"


We were at our friends' house for New Year's Eve. We see them maybe a couple of times a year, and they always notice the progress Max is making. "He's talking so much more!" Dawne said. "And his walking is great!"

I'm always thrilled to hear these comments. I know, of course, how well Max is doing, but it's heartening to hear other people acknowledge it. They don't even know the half of it; mostly, people notice the biggie stuff, like speech, cognition, agility. Later on, we started talking about Max and I told them he's been using the pointer finger of his left hand. He's never isolated it, but now he's pointing and pressing and touching his iPad screen. It's a Really Significant Thing. This skill alone will make many things easier for him. Although I'm not particularly overjoyed at the part where he likes to make water gush out of the water cooler.

"Wow, I never even thought of not being able to use your finger," Dawne said, and I could see she got what a big deal it was.

I'm totally comfortable educating people about cerebral palsy—the challenges it brings, the meaning of progress. Because I want them to understand that it isn't just the biggie stuff that's important, like being able to walk or talk, but smaller yet significant things, too. And I want them not to feel so sorry for Max.

Max just keeps coming along—not in leaps and bounds, but one step, one word, one finger at a time. And that's every bit as amazing.

Saturday, January 1, 2011

What was your favorite post of 2010?


I've shared several of my favorite posts of the year, and I'd love to read ones you've written! Just write the title of your post where it says "Your name" and cut and paste the link to the post where it says "Your URL." Once you've posted, leave a comment explaning why it's so meaningful to you. I know, it's hard to choose just one, so feel free to mention a couple.

* Gratuitous shot of cute dog by Evan Clark Photography