Wednesday, April 30, 2014

When life gets ridiculous, laugh

Every Tuesday, Max comes home from school with a "Word of the Week" sheet to fill out. He has to provide a synonym and an antonym, and use the word in a sentence. Every Tuesday night, he insists on making a sentence about Cars 2 Talking Lightning McQueen, his longtime love/obsession. "Lightning McQueen" will not suffice. Oh, nooooooooo. It must be "Cars 2 Talking Lightning McQueen," the present he got for his birthday.

As much as I'd like for Max to branch out, if it gets him interested in creating sentences, I'll take it. Last week's word: "convex." Our sentence: "The rubber part of Cars 2 Talking Lightning McQueen's tires are convex." All the sentences have sort of jumbled together in my mind, but they're all along the lines of "Cars 2 Talking Lighting McQueen often finds himself in predicaments but then figures things out."

Usually, I perch on the edge of Max's bed, and we go over the sheet. This week's word: "veranda." Max was a little stumped, so we put our heads together and came up with this:

Suddenly, I giggled. Because the ridiculousness of the sentence—and of having to constantly come up with ones that involve "Cars 2 Talking Lighting McQueen"—hit me. Then I started all-out laughing, until I had tears in my eyes. "Max," I finally gasped, "it's just funny to me that we keep coming up with Cars 2 Talking Lightning McQueen sentences." He giggled. I'm pretty sure he knows that he's being ridiculous, but he doesn't care.

I think it is perfectly normal to laugh like this. Kids do out-there things, and just because Max has special needs doesn't mean he should be treated like some hothouse flower. We tease him about his quirks like any family teases any kid. Max has this off again/on again habit of stomping on the floor when he watches TV. It's on again right now. The other day, as he was stomp-stomp-stomping away, Dave, Sabrina and I all started stomping our feet on the living room floor, rhythmically, like he does. He thought it was a laugh riot.

So when I find something Max is doing comical, I'm going to laugh with him about it. It's certainly better than the alternative, which would be to run screaming down the street, naked and shouting "CARS 2 TALKING LIGHTNING MCQUEEN! CARS 2 TALKING LIGHTNING MCQUEEN!" 

For years, I have indulged Max's obsessions, whether it's repeating phrases, buying him purple stuff or going through car washes. At times, I feel like I am living in a Coen brothers movie. 

It feels really, really good to laugh. 

Photo: Flickr/cynicalview

Tuesday, April 29, 2014

Finding a caregiver for a child with special needs: 12 key tips

This guest post on finding a caregiver for a child with special needs is from the dynamic Gary Dietz, a New Hampshire father of a 14-year-old boy with multiple disabilities. Gary is the editor of the new book Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them). It's an insightful collection of 41 candid essays and poems by men and women. Gary is very generous about sharing his wisdom; we can all learn a lot from his tips about what to do (and what not to do) when you're finding a caregiver for a child with cerebral palsy, autism, Down syndrome or other special needs.

As a father of a child with multiple disabilities, over the years I have hired (and chosen not to hire and poorly hired) more than a dozen in-home helpers, both day and live-in, full-and part-time. I’ve probably interviewed over 75.

Gary, his son and their all-time favorite caregiver, Jason

My experience with caregivers started well before I was a father; back in my late teens. I worked at an overnight camp for children with disabilities for four summers. I was a young caregiver for others’ children and I really needed to learn some hard lessons. Now I am a father who needs to find caregivers who have already learned these lessons. With that, I offer these key suggestions and conversations for the next time you're on the hunt for a caregiver:

1. Cast a wide net

A general good place to start is friends, local colleges and universities (especially teachers colleges), local social service agencies and Care.Com, which has a special needs category. Although Craigslist brings in a lot of really bad candidates, I actually was successful with it on more than one occasion, but I had to spend a huge amount of time sorting through inappropriate applications. Another option is an au pair with special needs training. An au pair visa arrangement allows a non-citizen to come to the U.S. to do childcare work and a cultural exchange.The licensed au pair agencies I worked with had a category on the form for "special needs." A rep I worked with tried to help both based on the database and her knowledge of candidates. This page has a list of licensed au pair agencies in the U.S.

I have had some negative and one positive experience with special needs au pairs, but other folks have had amazing results. Regardless of the source, be prepared to send a lot of generic “No thank you” emails and read a lot of resumes. (Yes, a resume or at least a detailed introduction letter is a must, even if it is from a younger caregiver.) A key point: Be organized and open minded.

2. Do a phone screener

The next step is to come up with a number of questions you can ask candidates by phone. These will vary by your child’s situation, your family situation, hours you’ll need and responsibilities you're seeking. A good idea is to set up a spreadsheet for must-haves, flexible-to-haves and nice-to haves. Check off items for each candidate you screen. These calls can save you a lot of time and frustration. Once, I had an extensive conversation and in-person meeting with someone who sounded great. I was ready to have her meet our son when she brought up the fact that she was not willing to help in the bathroom at all. Well, that was certainly nice to know. I added it to my list of phone screener questions. Next!

3. Now do a face-to-face meeting

It is really important to meet a caregiver face-to-face for an interview. But it is also important not to confuse a child by having them meet every candidate. Of course they should meet the caregivers on your final list before hiring. And if your child has the maturity and intellectual capability, you can talk to them about how many people they want to meet or even be in on the phone screener with. In my case, I tried to set up face-to-face meetings in my home when my son wasn’t around, so I could see the caregiver in our setting without risking a meeting too early. Some parents may feel more comfortable initially meeting with people at local coffee shops or other spots outside of their home.

This meeting is the time to dive deeper on the phone screen questions, ask candidates to tell stories, see how they listen and take note of what kinds of questions they ask you. It’s also a time to observe hygiene, dress and the kinds of things in his or her possession. A woman once showed up at my home wearing high-heeled sandals. Let me clarify: It was 20 degrees Fahrenheit outside, and there was snow and ice on the ground. If she didn’t care about her own safety, how could I expect her to care for my son? The interview was short. Oh, and if a caregiver can’t put their smartphone out of sight during the interview, that’s a red flag right there. A caregiver needs to be present and focused on your child.

4. See how the person communicates with your child

After all this vetting, the big day comes when the candidate and your child meet. A key thing to evaluate is how your child and the caregiver communicate. I always had the caregiver come in and meet my son at his favorite place in the house. If things progressed well, I would ask my son to give the caregiver a “tour” of his room and the house. And I would watch them and listen.

Even if your child’s disability makes it difficult for them to meet the caregiver’s eyes, or he or she is non-verbal, see how the candidate tries to engage with your child. Yes, things can be challenging on a first meeting, but at the same time, you can see if the caregiver knows how to connect with your child. Does the caregiver speak at the right pace for your child? Does he or she ask questions? How does the caregiver react if your child doesn’t answer a question?

I want to have people interacting with my children with maturity and respect. The language used needs to match the child’s capability. You can’t always see this right away, but you can see right away if it isn’t there. For example, if a caregiver talks to your child like a baby when your child isn’t a baby, run away.

5. Make sure their heart is in the right place

A caregiver, regardless of his or her education or background, should have the mindset of putting the child first. Whether you are interviewing someone who is studying to become a speech therapist or a grandmother who has worked with hundreds of typically and atypically developing children over the years, the key is to understand their motivation for wanting the job you're offering. Does their calling match the ethic of your family and its needs? For example, if someone says something to you like they have “a calling to help those less fortunate” or they want to “help your poor child,” will you cringe or will you think that this “noble reason” will help them be a better caregiver? Will an honest answer like “I am a speech therapy masters candidate, and spending these next months with your child will help me with my resume” be someone you think can be a caregiver, a therapist or both? Not that any of these examples should lead directly to a decision. You just need to reflect on their heart and intentions and see if they match what you think would be best for your child and family.

6. Ask “the mall” question

Someone suggested this great question to me and I use it all the time. The scenario I present during interviews: “You and my child are alone in the mall, and a pack of rowdy teens passes. Someone says some really offensive stuff about my child. What would you do?” If the caregiver answers that they would engage the teens and say they were rude or wrong, or try to get into a disability discussion, I would begin to discount this person as a hire. The tenets of a correct answer to this question revolve around the safety and well being of your child, not in community teaching. There is another time and place for that kind of advocacy. The caregiver’s concern is removing your child from the situation as fast as possible. And then, at a level your child can understand, explaining to him or her what happened and help them feel better—just like you would any other child who was exposed to name calling.

Once, I hired a caregiver despite her answering the mall question wrong. But she earned interview points “back” because she deeply engaged me in an extended discussion about advocacy and listened and learned from me about why and when “backing down” to fight the fight another day made more sense in the context of my child’s well being. This opened up a great line of communication between us.

7. Know whether they’re strong enough for the job (literally)

Whether a person is physically able to handle a child can feel weird to broach, but it needs to be asked. I’ve found it’s helpful to approach in a task-specific way like, “Tell me about your training in wheelchair transfers” or “Can you fold and place a 75 pound kid-cart into the trunk?”

8. Explore their special needs experience

Of course you want to hire someone with great experience. As in any other kind of interview, asking open-ended questions gets the candidate telling stories. Try, “Tell me about the most challenging behavior you helped manage in a typically developing child and with a child with special needs.” Also set up a real situation that has happened with your child, then ask them how they would have handled it. If relevant to your child, ask them how they handle being pinched or hit.

Just like hiring folks for other kinds of professional jobs, if they have a non-specific list of the dozens of “experiences” they have had and it seems like an exaggeration, it probably is. A really bad sign I hear once in a while is when a candidate says “Oh, I’ve worked with a lot of kids ‘like’ your kid!” when they don’t really know “your kid” at all yet. Trust your gut. 

9. Get several reference checks

Ideally, you should get at least three references you can call. When you speak with the reference, introduce yourself briefly and generally talk about the kind of disability your child has. If the reference is another special needs parent, you shouldn’t hesitate to ask about the kind of special needs their child has or the care involved. Once, a candidate I was vetting provided amazing written references. After checking, it became clear that she was only used to physical disabilities and relatively physically docile children and she wouldn’t really be a good match for a child with behavioral and intellectual challenges.

If possible, share a story the candidate told you about working with that family, and check to see how closely it matches the parent's recollection of that story. Human nature dictates they will slightly differ, but if they don’t seem at all alike, that should raise a red flag.

If a candidate seems really promising, but doesn’t have specific special needs experience or references (and has been up front about that), ask references for specific examples about patience, focus, responsibility—the things you would ask of any reference for childcare. But also ask the reference’s opinion about the most difficult situations the candidate had with their family. Take notes and think deeply whether those challenges the candidate dealt with are applicable to your family.

10. Show them the money (literally)

The truth is, this profession doesn’t pay well. You need to be sure that the candidate understands their pay and benefits package (or lack thereof). Write out the details of their package. What will they be paid? When and under what conditions will there be a bonus? What kind of time-off and sick policy is there? I made the mistake of thinking that a caregiver of the level that could work with my son was used to these kinds of agreements. But often, they were not. So, don’t hesitate to write everything down and have them reflect on it even before an offer. There is nothing worse than your child building a relationship with a caregiver and then, after a few months, having them say “I thought I could live on this salary but I really can’t.”

11. Don’t rule out men

My ex-wife, much like many women and men, was completely adamant that we not hire a male caregiver. I am pretty sure it was for the generally debunked myth that men who want to be caregivers are likely to be child molesters. However, I had a kick-ass resume from Jason, and got a really good vibe from him on the phone. So I encouraged my ex to chat with him. Jason was kind, liked to read to kids, was very soft spoken and extremely (to the point of my frustration sometimes) analytical about what he should do in a particular situation. He was fun and energetic and ended up being a real friend to my son. We hired Jason, and he was, we agreed, hands down, the best caregiver we ever hired.

12. Don’t let exhaustion and frustration force your hand

Sometimes, as parents, we are so tired and frustrated that we unintentionally try to squeeze a candidate into a role that isn’t for them. If your gut is telling you something’s not quite right, do not settle. Think of it this way: If things don’t work out, it’s going to be a terrific pain having to go through the process all over again.

To purchase Gary's book at a 15 percent discount for Love That Max readers (thanks, Gary!), head on over to this page. Follow the Dads of Disability project on Facebook here.

Monday, April 28, 2014

When kids with special needs know their limitations...and don't care

Know your limitations, the saying goes. When it comes to kids with special needs, one question is whether they are aware of their limitations. I've wondered that about Max. He knows he has cerebral palsy. But he doesn't ever make much of it because to him, well, he's just Max. I know now that he has a sense of his challenges because of what happened this weekend.

First, I tried to take him to a local adaptive softball league for the first time. The field was wet from rain, and so the practice session was held indoors at a gym. Max had his headphones on but there was such a din that he dashed out of there within maybe three minutes, vehemently shaking his head. Mommy tortured me, once again, he was probably thinking. And: Can I sue her for that?

In the ride back home, Max and I talked about how he might be game to try softball again when it was outdoors. I wanted to make up for his sensory shakeup, so I suggested we stop by our local fire department. Lately, Max has been telling me that he wants to be a fireman when he grows up. I knew it would be a treat for him.

Firefighter David was the first to greet us and invite us inside. He gave us the lay of the land, and several times Max "What's that?", his new favorite phrase. Then he offered to let Max sit in one of the fire trucks. "Buddy, let me help you up here," he said, throwing open the driver side door. But no: Max wanted to sit in the backseat. He informed us both that when he grows up and he is a fireman, he is always going to sit in the back seat.

I wondered whether it was because he did not think he would be driving. But if so, I also wondered just how he was planning on putting out fires when he arrived on the scene. Holding things, like spoons and toys, doesn't come so easy to him. Holding a gigantic water hose? Um, not one of his superpowers, at least now, anyway.

Then Firefighter Angelo came downstairs, and they were each other's new BFFs. He took Max and me upstairs to the department's private quarters, where they eat, sleep and hang out. Max chose the bed he was going to sleep in, conveniently located in front of the TV. Fireman Angelo gave him a fireman's cap.

Max also chose his chair in the dining area, and explained that he would be cooking macaroni and cheese to eat. He noticed some big, red alarm bells and noted that they would be loud. He looked in fascination at a sliding pole (they still use one at our station) and squealed when Fireman Angelo slid down. And would Max want to help wash the ambulance? OH YES YES YES YES YES. A dream come true: Washing cars at the firehouse.

I had a heck of a time getting Max out of there, but told him we could bake the firemen cookies as a thank you and return. And wouldn't you know it, he wanted to do it the second we got home. So we popped in some of those Lightning McQueen sugar cookies

Then Max grabbed my hand and led me out our front door, where he pointed to some windows on the first floor. He made a motion like he was washing them, and I really wasn't sure what he was saying at first. Then I realized. 

"Max, are you saying that when you are a fireman, you are going to help people on the first floor by putting out the fire there?"

"YEAH!" he said, his eyes shining brightly. 

And I knew then: He figured that he wouldn't be able to get up a ladder, so he'd stick with the first floor. And I loved that he was thinking like that.

"And how are you going to hold the hose?" I asked. 

He gave me a look and held out his hands. As in: DUH, MOM! I will use my hands!

And I so loved that.

"Know your limitations, then defy them" is another phrase I've heard. I'm not saying Max could grow up to be a fireman. But perhaps there will be some less active role he could take on. Really, who knows what possibilities the future holds? For now, I love that he is thinking this all through. This boy's got career plans!

Then again, in a few weeks Max might wake up and decide he wants to be a teacher (he absolutely adores his current one), or a chef like the ones on the Food Network or heck, maybe he'd like to be a mountaineer and hike Kilimanjaro. I think that would be a great Daddy and me trip.

Oh, and FYI, Max would like to be referred to as Fireman Max. 

Friday, April 25, 2014

The Special Needs Blogger Weekend Link-up: 100 percent preservative free

It's the Special Needs Blogger Weekend Link-up, sooooo good for you.

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: Is it summer yet?

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, April 24, 2014

When friends don't get your special needs life: Group therapy

"My husband and I are having a hard time right now relating to our friends," read the message on my Facebook page. "They just don't get it and we have begun to feel as if we are now being treated differently and not included anymore due to the fact that our daughter is disabled....  I have begun to feel that good friends are viewing us as 'complainers' because we have more struggles than the average family. When friends do call and everyone is together, we feel ignored.... I think having others' perspective will help us feel not so alone."

It's hard not to feel excluded as a special needs parent, because sometimes you are. I used to do girls' night out with a group of local women. All of us had kids around the same time. They started having playdates, and Max and I were never invited. I complained to the therapist. "Maybe they're not your friends," she offered, and I thought that was cruel of her to say. But eventually I had to acknowledge she was right. Those people were just acquaintances, ones who didn't know me all that well. They weren't up for handling a special needs baby who wasn't developing like their kids, and his worried mom.  

Even good friends may not be sure how to behave around you. I remember one telling me point blank when Max was close to three and not yet walking that she was never sure whether to invite me to out, like to the park, because Max couldn't run around like her kid did. "We'd love to come, just to be with you," I said. "We'll figure out fun stuff for Max to do." And we did. In retrospect, I wished I'd been more proactive about making plans with people instead of feeling sorry for ourselves when we had none. 

I have wonderful friends who have always been there for me—to listen, offer advice, or do whatever they can to help (my girls Wendy and Hedy watched Sabrina when Dave and I took Max to Duke University to get his stem cell infusion five years ago). I have also found comfort and camaraderie in this online community. And when Max was little, I saw a shrink. It was a relief to freely grieve, rant and cry to someone without concerning myself that the conversation was too one-sided.

How about you: Have you felt like this mom does? How have you handled it? 

Wednesday, April 23, 2014

Max would like to know what that is

"What's that?" Max asks. We're at a restaurant that's handing out balloons to kids, and he just watched a woman fill a purple one with helium. Now he wants to know about the device she used.  

"The machine blows air into the balloon so it can float," I tell Max. "It's a special kind of air called helium, not like the kind of air you blow from your mouth."

He seems satisfied with the explanation. Me, I'm thrilled that he asked. 

"What's that?" is a relatively new Max phrase. It's not just his ability to articulate the words that excites me—it's that he's asking, period. Intellectual curiosity starts when kids are young, but as a tot Max didn't exhibit a whole lot of it. Perhaps that's because most of his energies were focused on physical development, including crawling, toddling and using his hands and fingers. He also wasn't all that able to express himself, period: He had a Dynavox as a speech device, but it was a clunker and not easy for him to use. 

Once Max got an iPad, we programmed questions into it. But it wasn't until he was 9 that he started articulating questions, beginning with "Today?" (As in, "Are we going to Disneyland today?") That's still a favorite one. But lately, all he wants to know is "What's that?" It sounds like "Wha eh?" and I have to translate for people. 

"What's that?" he asked when he was looking at my nightstand the other day and spotted a little night light you clip onto books.

"What's that?" he asked when we were at an ice-skating rink and a Zamboni came out.

"What's that?" he asked as I downed cottage cheese straight out of the container the other day, because I am reckless that way.

"What's that?" he asked, pointing to a Target gift card I was holding.

"What's that?" he asked when Sabrina was working on an invention she's creating for a school project.

"What's that?" he asked about the bug trap we put by the back door following The Invasion of the Ants. 

"What's that?" he asked, pointing to the roll of fat on my stomach as I stepped out of the shower. (Clearly I need to eat more cottage cheese and less pasta.) (Or at least lock the bathroom door.)

Blubber belly incident aside, I am fascinated by this new stage in his cognitive development. With Sabrina, I never had any doubts. But Max's mind growth is one of the joys of special needs parenting. It's exciting, because his world is opening up. It's astounding, because I know just what his brain endured at birth. And it's payback for the early years, when the "What will he be able to do?" worries consumed me.

I still don't know the answer. And that's a good thing.

Photo: Flickr/Ed

Tuesday, April 22, 2014

When doctors deny care because of costs

File this under "Because we don't have enough to worry about." Also: "Knowledge is power."

Doctors are now starting to weigh the cost of medical care as they make decisions about patients, reports Andrew Pollack in The New York Times. It cites a study that examined 30 sets of medical guidelines issued by physician specialty societies; seventeen of them took costs into account.

The article doesn't address special needs healthcare, but it's not hard to imagine how this could impact our kids. Sadly, there are already medical experts out there who think the lives of people with special needs are worth less than others, as we saw with little Amelia Rivera. She has Wolf-Hirschhorn syndrome and intellectual disabilities; a doctor at CHOP deemed her a bad candidate for a kidney transplant because, he noted, she was "mentally retarded." (Amelia got her transplant in July and is thriving, per this USA Today article.)

This is not to say that the wonderful neurologist, pediatrician, physiatrist or whatever specialist who cares for your child is necessarily going to start denying him tests, therapies, equipment or medicine. For that, we have insurance companies! (He, he.) But this is to say that we're living in a changing healthcare world and it's a good thing to have in the back of your head should you ever face a situation in which a medical expert is against giving your child a treatment.

As parents of kids with special needs, we know to ask—and ask and ask—questions about the care our kids receive. This is just yet one more to add to our arsenal.

Image: Flickr/Robert Huffstutter

Monday, April 21, 2014

In which we crash the autism-friendly Disney Junior Live performance

Max crashed the autism-friendly Disney Junior Live! performance at New York's Madison Square Garden this weekend. I'm joking, of course, because it's not as if they were carding kids at the entrance to make sure they had autism or, as my friend Lisa said, checking IEPs. I do think shows like this would be more inclusive if they were called "sensory-friendly," as I noted when the first Broadway autism-friendly performance was held, but in the end what matters most is kids having a great time. This weekend, a whole lot did.

Max has been talking about Disney Junior Live! ever since he broke through his stage fright (as in, going inside a dark theater) at Disneyland, saw a performance and asked to go back. Then we saw Disney on Ice in January. So when I heard there was an autism-friendly performance in town, I got us tickets.

Taking the train there was half the fun

He showed his ticket to the guy sitting next to us

Volunteers from the Theater Development Fund's (TDF) Autism Theatre Initiative stood outside the entrance, handing out squeeze toys. The security people inside could not have been more accommodating (if you've ever been to a concert at Madison Square Garden, you know that they tend to be on the, er, brusque side). Max doesn't like escalators, and one of them escorted us to an elevator.  

A special activity area outside the theater offered toys and coloring for kids who needed to chill before the show or during it

Max walked right into the theater. The usher told us that we were seated toward the front. I was psyched; Max not so much. And so, we stood behind the railing by the entryway. A volunteer asked if we wanted ear plugs. An usher said we could sit anywhere we wanted in the back since the show wasn't completely sold out.

I have never before been at an event filled with special needs kids and their parents and it felt amazing. Kids were doing their thing, some bouncing around, flapping or having meltdowns, and nobody batted an eye. There were parents there with adult children, and I wondered if that would someday be Max and me. 

A volunteer handed out koosh balls; Max got a purple one

I'd figured I would bump into someone I know, but it pretty much felt like I did know those other moms there. In the bathroom, Max headed out the wrong way and one of them gently said, "This way, sweetie." I traded smiles with other parents. Lisa Quinones-Fontanez from Atypical Familia spotted us and we hung out with and her beautiful son, Norrin, for a bit. 

Then the lights dimmed a bit, and the show began. They stayed on the entire time and the sound level was a bit below the norm, though it wasn't exactly quiet. I hadn't checked the tickets closely; it was a Princess and Pirates performance. They're not Max's faves—he's a Mickey Mouse kinda guy. But it didn't matter: He was still mesmerized by the princess crew and Jake and the Neverland Pirates. 

Me, I got a little bored (gasp!), so I sat down to scroll through email on my iPhone. A mom in the row in front of us saw me and grinned. "What, you don't find this fascinating?!" she said, and we both laughed. 

Finally, Max got weary of standing and agreed to sit. I helped him drink some of the emergency chocolate milk I'd brought, because you never do know when you're going to need chocolate milk. He perked up when Mickey and Minnie came out at the end, and didn't want to leave once the show was over in the hopes they'd return. 

Then he told me he'd like to see another Disney Junior Live!, please. How about it, Dave?

Friday, April 18, 2014

The Special Needs Blogger Weekend Link-up: Read away

It's the Special Needs Blogger Weekend Link-up. Just when you weren't sure what to do with all that spare time on your hands!

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

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'm Crashing An Autism-Friendly Disney Junior Live Show

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, April 17, 2014

What goes around comes around in our special needs community

Five years ago, a friend I met through this blog let me know that Duke University had stem cell clinical trials for kids with cerebral palsy. She had a child with special needs, too, and she'd gone to an informational meeting at John Hopkins about stem cell therapy for children with disabilities. She thought I should know about what was happening at Duke. "I picked up an extra packet at the conference for you... It has a lot of info that may interest you!" she wrote.

I got in touch with the Duke University doctor in charge of the stem cell program, Joanne Kurtzberg, M.D. A few months later, Max got his stem cell infusion.

If it weren't for that reader, and her drive to look into anything and everything possible to help her son, I might have never known about the stem cell work being done at Duke.

That friend is Kate Leong of Chasing Rainbows. This week, it's a year since her son Gavin passed away—a year in which he's had an impact on countless lives, thanks to the do-good initiatives, organ donation awareness and charity initiatives Kate's launched in his honor, most recently Gavin's Playground Project. This week, I got an email from a mom to a 21-month-old girl with cerebral palsy. It read:

I just wanted to let you know that my daughter got a stem cell infusion at Duke University. I learned about it from your blog and wanted to thank you....  

This is the circle of help and hope in our community. We inform, encourage and inspire each other. We know what it is like to be that mom of that child. While we don't always know exactly who we will help with our blog post or Facebook update or donation, we put it out there into the universe, powered by caring and compassion.

Sometimes, it comes back to you in the most amazing way.

I do not think it's a coincidence that five years ago this spring, Kate told me about the stem cell infusion we eventually got for Max. And this spring, another child received one because Max did.

What goes around comes around.

Image of hands: Shutterstock

Wednesday, April 16, 2014

Does the punishment fit the crime for this bully?

One thing's for sure: South Euclid, Ohio resident Edmond Aviv has issues. Court records say the 62-year-old harassed his neighbors, the Purghs, for 15 years, as reported in the Cleveland Plain Dealer. The family has two adult children with developmental disabilities, cerebral palsy and epilepsy, and a paralyzed son; the husband has dementia. 

Records indicate that, after suing the family in 2010 because he was annoyed by the smell of fabric softener coming from their dryer vent, he dumped fabric softener on their lawn. He also had a fan blow kerosene fumes onto their property. Mom Sandra Prugh claimed that Aviv once smeared dog feces on their home's wheelchair ramp, and also spit on her on two separate occasions. 

When the Purghs took him to court, Aviv pleaded no contest to a fourth-degree misdemeanor charge of disorderly conduct. The judge ordered him to serve 15 days in jail and seven months on probation. She mandated that he complete 100 hours of community service, anger management classes and personal counseling. And she also ordered him to sit at a busy intersection this past Sunday for five hours with a handwritten sign that read, in capital letters:

"I am a bully. I pick on children that are disabled, and I am intolerant of those that are different from myself. My actions do not reflect an appreciation for the diverse South Euclid community that I live in."

Reading about this man's actions made me mad. Reading about the sign made me uncomfortable. 

Shaming punishments, including ones involving signs, are nothing new. In one recent case, a 12-year-old in Houston who cursed at his teacher had to stand on a street holding a sign that proclaimed "I was suspended from school for cussing out my teacher." While some people are all for this form of justice, others consider it cruel and unusual punishment and say that it degrades our legal system.

I have mixed feelings about public shaming, but had particular concerns this time around. I wondered whether it reinforces societal perceptions that kids with disabilities are delicate creatures unlike others—why bullying them warrants punishment beyond the norm. Had this guy messed with kids next door who were typically developing, it's doubtful a judge would have made him hold up a sign. Also, the wording made it seem like he'd gotten in trouble only because he bullied kids with special needs. Actually, per the reports filed he'd harassed the family, one that happened to have members with special needs. Actually, an adult bullying any children—special needs or not—deserves punishment.

It's unlikely that Aviv's public humiliation would deter him from hating on people with disability again, although perhaps the community service and therapy parts of his sentence might have some impact. Too bad there's no vaccination for hate.

So, I don't think that public shaming needed to be part of this man's punishment, as vile as his behavior was. What say you?

Photo: Screen grab/ABC News video

Tuesday, April 15, 2014

Why this night was different than all other nights

We celebrated Passover last night, momentous because Max sat through the seder (the traditional dinner) for the first time, and because I only had to go on Facebook twice to ask for advice about cooking brisket (consensus: I needed to cook it for an hour more).

During the seder, the youngest child asks The Four Questions—really, four answers to one question, which is "Why is this night different than all other nights?" The answers go on to detail what's special about Passover, including the fact that we eat matzo (flat, unleavened bread), not bread.

But last night, there were five answers: The night was different because Max sat through the entire Passover meal. In other years, the tradition has been for him to hang in another room watching TV as our family said the prayers and told the story of Passover (in short: the Jews were slaves in Egypt, Moses lead them out and parted the sea, then they all starred in a reality show).

But Max has seriously matured this past year and is having all sorts of breakthroughs. It's funny because I've also matured, and I wasn't expecting him to stay for the seder. I'd pretty much accepted that he wouldn't and I wasn't even sad about it, as I have been in previous years.

Things were different starting yesterday morning, when Max was so excited that everyone was coming over. He showed me which seat he was going to sit in. He giggled when he got off the school bus in anticipation, and he greeted everyone animatedly when they walked in. His only demands: headphones and a pre-dinner cocktail of chocolate milk.

Max listened to the entire seder. He downed a bazillion servings of sweet potatoes. He seemed genuinely happy. Dave kept shooting me "Can you believe this?!" looks from across the table.

After dinner, Sabrina and her little cousins participated in the ancient ritual of Katy Perry karaoke. Then we all got on a sugar high from dessert, including the world's most amazing flourless chocolate cake Sabrina and I made from this Real Simple recipe. Max's belly looked like it might explode.

When I tucked Max in, he put his hands together, the symbol for "more."

"You want another seder?" I asked.

"Yeah!" he said. "Please?"

He was in luck, because there are two Passover seders. This time, it'll be just the four of us. And I have a feeling tonight will be different than all other nights, too.

Monday, April 14, 2014

Will he or won't he: How we live our weekends

Max's school had an ice-skating event at a rink this weekend. Dave wanted to go fishing with his dad and the kids. The big question: Would Max go?

We're never sure whether Max will be game to try a new activity or not. Headphones make him more comfortable, and he's gotten braver over the years. Still, sometimes, he'll say yes, then bail.

This weekend, we had some wins.

Our weekends are usually a mix of Dave and I splitting up and doing different activities with the kids, then doing some as a family. I tend to take Max to the stuff he's more hesitant about, like we did with his first movie in a theater. This is because I'm the one who's more likely to persist when Max whimpers and try to coax and cajole him into trying stuff he's hesitant about. (In my next life, I'm going to be a foreign diplomat.) So off to the rink we went.

I decided not to tell Max what we were doing. Ice-skating rinks have a din, and Max has never wanted to venture into one. He did love skating on a pond with a walker when we were in Colorado last year, though, and I was counting on that. I took his Maclaren big-kid stroller, which his old PT gave to us from another family. Max likes pushing it around the neighborhood. The skating rink said kids could be taken around the ice on their strollers.

We got to the rink. I took out the stroller and helmet, then got Max out of the minivan. "We're at an ice-skating rink, and other kids from school will be here!" I said. He absorbed that. "Loud?" he asked. "No, it's not loud now," I said, which was the truth—the event was only for kids from his school. And Max cruised right in through the doorway, like a boss. I sighed in relief.

First, Max wanted to glide the stroller over the his shoes. (He's not up to wearing ice skates yet.) I'm not the steadiest on skates so there I was, walking on ice next to him. Then Max sped up and took a slip and that was the end of that.

Our hero came skating up to us: Nick, an instructor there. He zoomed Max around in his stroller, and Max thought it was The Best Thing Ever. I kinda wanted to try it myself.

Next up, a new sport: sledding on ice. Slice?

When the event was done, Max didn't want to leave. So we had a slice of pizza and watched kids practicing ice-hockey. Max was enchanted by the goalie. "YAY!" he'd say, throwing his hands up in the air when he blocked a goal. I asked if he'd like to play someday. "No!" said Max. "Fireman!" 

Lately, he's been telling me that he wants to be a fireman when he grows up. I tell him that's a hard job to do. He reassures me he'll be ready, especially since he will be seeing Planes: Fire & Rescue as soon as it's out in July.

Sunday morning was the fishing trip. Grandpa Michael has been showing Max how to use a fishing rod, and Max was up for going so off they went. Max hung out for maybe 30 minutes, then he was done. I didn't blame him—I get restless, too. 

What's made trying new activities and visiting new places easier is that Max no longer has crying-sobbing-shrieking meltdowns when he decides he's not doing something, excluding restaurants, where all bets are off. If he says no, we just sloooowly back away, and we're done.

Last night, he surprised us—emboldened, perhaps, by his other weekend adventures. Max is into avocado sushi rolls, and he told us he'd like to try a new sushi place. So Dave Googled, found a spot we've never been and we headed there. Max walked right in, headphones in place, iPad in my hand. He watched Monsters University. He ate miso soup and avocado roll. We had a nice family dinner out.

And I took none of it for granted.

Friday, April 11, 2014

The Special Needs Blogger Weekend Link-up: Join us

You've come to the right place: It's the Special Needs Blogger Weekend Link-up.

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

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: Where Can I Buy Lightning McQueen Stock?

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, April 10, 2014

On knowing when to not be the mama warrior

When you've parented a kid with special needs for years, you have warrior blood running through your veins. The kind it takes to advocate for your kid, fight for what he needs and, as necessary, raise hell. Over time, though, you realize that you have to pick your battles, because you only have a finite amount of time and energy.

And sometimes, you might learn that you are looking to fight when you shouldn't be, as happened recently.

I've had it in my head for awhile that I'd like Max to have an inclusionary camp experience. Max is in a school for kids with special needs year round. I'd like him to expand his horizons, and get a sense of what life in the real world is like with so-called typical kids. Well, the real camp world, anyway.

A teacher I really respect works at a camp that has an inclusion program and sings it praises. I checked the site; the camp is mostly for kids with learning differences and social communication disorders, Aspergers and autism. Still, I figured, it would surely be open to a child with disabilities. She encouraged me to look into it. So, I reached out to the director. During our initial phone call, she  seemed a little hesitant about Max, but she offered to meet up with us at Panera one afternoon.

Max and I got there first, and we grabbed a bowl of chicken soup for him and a table in the back. I was tucking a bunch of napkins into Max's shirt collar when she arrived. (Soup = very messy food for him.)

She greeted me nicely and said a warm "hello" to Max. She watched as I fished the chunks of chicken out of the soup because they're a choking hazard for Max. We talked as Max splashed soup all over his shirt and gave her his occasional charming Max smile. He said a few things, what, I don't recall. I explained the range of Max's needs—that he required assistance getting dressed, bathing and toileting. That he used a speech app to communicate. She said the camp had a few kids with CP.

Then said to me, pointedly, "We have a girl with apraxia at camp, but she speaks in full sentences." I stared at her. I wanted to snap, "And what's your point?" but I held back. I knew exactly what she was getting at: Max does not speak in full sentences and when he does, at times even I have a hard time making out what he's saying.

Then she said that counselors didn't touch children. I agreed that, yes, Max would require an aide to attend the camp. I told her that I liked this camp in particular because it was inclusionary, and that while I knew of camps specifically for kids with special needs, I wanted one where he got to mingle with all sorts of kids.

At the end of our meeting, she wanted to see how Max walked. I couldn't believe she blatantly asked that. Max actually decided he'd had enough and wanted to make a break for the door, so she got a chance to see how Max runs. A little wobbly, but fine.

I left there feeling uneasy, and concerned that I was going to have another battle on my hands. When I emailed her to say thanks for meeting up, I wrote "He is such a social child and I really want him to benefit from an inclusionary experience. I feel there must be a way for this to happen."

When she emailed that she was looking into another program for Max I responded, "Just so I'm clear, you believe that your camp cannot accommodate Max?" and she wrote back the camp "would not be a good fit for Max." She said she'd be happy to help in any way she could, and to let her know if I found a "suitable" program for Max.

I didn't doubt her sincerity. But I was upset, and miffed.

I kept thinking and thinking about that meeting in Panera. I wanted to call that director and tell her my son had a right to be at the camp, even though he would have needed an aide. Then I Googled to see whether her turning away Max violated the Americans with Disabilities Act, the law that prohibits discrimination against people with disabilities. It actually didn't.

Title III of the ADA protects disabled Americans from discrimination in places of public accommodations, like buildings and swimming pools. But religious institutions are exempt from Title III, and the camp I was looking into is run by a religious entity. Otherwise, many camps do fall under the ADA, including private ones and public ones such as those run by the YMCA. I read about a lawsuit in which a Connecticut town was required to provide diabetes management for kids attending the recreational department's summer camp.

Still: Excluding my kid with special needs from a camp for kids with special needs just seemed so wrong. I found that camp director guilty, in the ethical and moral court of my mind. One of the things I want most in this world is for Max to experience as much of it as he can. I feel it's my mission to make that happen for him, however I can. If I don't, who will? I'm driven by that passion, and fueled by love. And iced coffee.

The days went by, then weeks. I Googled around more and found that many sleepaway camps specialize in types of special needs, and that it was less common to find camps that accepted kids with special needs of all kinds. I had to admit that made sense. Special needs aren't one size fit all, and a camp not used to accommodating kids with physical needs like Max might not be the best fit for him. That camp director carried through on her promise and connected me with a program that works with kids like Max. It's not going to happen this summer, but maybe the next; it seems promising.

I condemned that camp director all too soon. For now, I have options, and I'm going to explore them. There's a time to push for special needs services and inclusion, and make sure your child with special needs gets what he needs. And there's a time to accept that what you hoped for may not work out and pursue other possibilities. Us special needs mama warriors need to know the difference, if for no other reason than to keep ourselves sane.

Image: Flickr/Shavawn 

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