Friday, August 30, 2013

Special Needs Blogger Weekend Link-Up: Labor Day Weekend Edition

It's another Special Needs Blogger Weekend Link-Up, extending through Labor Day! So much more exciting than all those Labor Day sales, eh? Um, not that there's anything wrong with buying your fourteenth pair of strappy sandals because you got  a great deal. Not that I know anybody like that.

The idea

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

What to do

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

Like this: Love That Max: My Sister Went To Camp And All I Got Was A Lousy Week Off

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, August 29, 2013

New accessible playgrounds for kids with special needs

Question: How many parents does it take to build an accessible playground for kids with special needs?

Answer: Two—or even just one—for starters. At least that's the trend. This week NPR ran a great story about Jonny and Melissa Fisher of Pocatello, Idaho, who built Brooklyn's Playground. It's named after their 7-year-old with spina bifida. Several years ago, her father put her in a regular swing at a playground; she flew out of it and hit their head, which is when the Fishers decided to build a playground for her.

They set about raising money, helped by a local civic group—from grants, bake and garage sales and donations. They raked in $580,000. As NPR reports, 3000 people showed up to build it, finishing in a week. Now, a California mom is doing the same for the sake of her daughter with spina bifida; so far, she's raised $400,000, NPR reports.

LOVE it. Our neighborhood doesn't have accessible playgrounds so Dave and I are basically Max's adaptive equipment, although hopefully that situation will change in upcoming years. Last year, updated Americans with Disabilities Act Standards for Accessible Design went into effect for public recreational areas including playgrounds. Any new construction or playgrounds getting renovated must comply. Sadly, the reality of shrinking local budgets is another story—ditto for cities' actual compliance (for more on that, see part 2 of NPR producer Robert Benincasa's investigation, New Accessible Playground Rules May Not Go Far Enough).

Meanwhile, parents are stepping up to the plate (and the swing and the slide) to work with nonprofits on building inclusive playgrounds (see resources below). In the near future, 26 very special universally accessible playgrounds will be completed. Built by The Sandy Ground Project: Where Angels Play in Connecticut, New Jersey and New York, they'll honor the children and educators who died at Sandy Hook Elementary in Newtown. So far, seven have opened, and two more are set to be built in September. Dedicated in June in Westport, CT: a playground for Dylan Hockley, who had autism and liked to flap his arms and pretend he was a butterfly. There's lots of purple, his favorite color—and butterfly designs.

To find accessible playgrounds near you:

• Playgrounds For Everyone is NPR's brand new searchable site/app; users are encouraged to list any accessible playgrounds they know of that are not included.

• Accessible Playgrounds has lists of sites by state in the U.S. and provinces in Canada.

For info and guidance on building accessible playgrounds:

• Boundless Playgrounds is a nonprofit that works with communities to develop accessible playgrounds; it's already helped build 200 in the United States and Canada.

• Shane's Inspiration, started by parents who lost their son to spinal muscular atorphy, has developed more than 40 universally accessible playground projects throughout Southern Calfironia and as far away as Sri Lanka, and offers consulting.

• Kaboom, a nonprofit dedicated to creating playspaces through the participation of leadership communities, has an accessibility section with guidance on planning an inclusive space in a community.

• Unlimited Play builds universally accessible playgrounds in Missouri.

Last, this site has an extensive list of playground equipment grants and fundraising resources.

Image: Flickr/Mimi Cummins

Wednesday, August 28, 2013

The mom's response to that shocking autism hate letter about her son

These words are from Karla Begley, mom to the 13-year-old with autism who was the subject of an anonymous hate-filled letter that made headlines around the world. Max's brother, Jack, 15, is also on the autism spectrum. Karla, 44, has multiple sclerosis and is in a wheelchair so she's by no means a stranger to intolerance, though not like this. A reader from Ontario who knows Karla asked if I wanted to connect with her. I sure did. I asked Karla what response she'd give to that person; this is what she had to say.

I will not stoop to an insulting level. What I have to say is about tolerance, acceptance and respect for kids with special needs.

Nobody should ever write a letter that hurtful. It describes Max as being "noise polluting" and "a nuisance." Kids make noise. That's what kids do. Nuisance is causing a public uproar about it! I remember being a kid and screaming at the top of my lungs with another girl. The problem is that tolerance goes down the second a kid is out there in a yard alone, a kid with special needs, making noise. Those "noises" are the only way my son has to express himself and play.

If Max's sounds bother someone, I'd hope that person would let us know in a respectful way. Give us a chance to handle it instead of being cowardly about it. I'd rather people bring things out in the open. Sometimes, kids come up to me and ask "Why does he talk funny?" The parents are embarrassed. But if the mom isn't going to talk properly to a child, or teach him that kids with autism are not contagious, I will! It's important to help kids understand and not be fearful from a young age. I'll tell children, "He has autism and he has trouble with speech, but you can say 'hi' to him." And then I'll have Max say 'hi' back and it's OK. I'd rather kids ask than grow up to be the sort of people who write nasty letters about autism!

Even if Max doesn't speak like the rest of us do, he understands. He reads my face, too. If I'm not all happy, he comes up to me and says 'Mommy cry?' and if I am crying he'll wipe my eyes and give me a hug. He may not do things other kids do, he may not be on a sports team, but he has a zest for life—he loves to look around, listen to music, go snowmobiling and jet-skiing with his father.

People with special needs are people first. They have every right others do. Instead of glares, I wish people would give smiles. Instead of anger toward parents, I wish people would be more understanding. Trust me, if there's behavior ruining someone else's day, it's ruining mine and I want to deal with it! When we first started trying to take Max out, we went to McDonald's because we figured it's not a fine-dining place where we'd ruin someone's dinner. I didn't notice Max was kicking the back of a seat. When a guy turned and said "Please stop that kicking" I explained, "He has autism and we're trying to take him out, we're just glad he's not screaming!" And then the guy was fine and sweet to Max. I was glad he didn't freak out, and that he listened to me.

Max has shown us there are many ways for people to communicate—he always gets his point across and he's smart. If he wants to watch a certain video, and you're not understanding him, he'll get up and hand it to you. One time, we were in the car and he was saying "twinkle, twinkle" and I said, "You want Mommy to sing?" and I could tell from the look on his face he didn't want that. Then he said "bus" and I realized he wanted me to sing "The wheels on the bus go round and round." Sometimes, it's like charades, but he gets his point across.

Max has gotten a lot of therapy over the years. It's helped him communicate, and retrained his brain so he can focus and learn and be a part of society. Before he started getting ABA therapy, at 2 and 1/2, he mostly just sat in a corner and wiggled a string or sucked on his blanket or shirt—it was anxiety, we later learned. Max's therapy has been expensive, but this is what it means to be a society: You help those in need. Would anyone consider people with cancer a burden? Or senior citizens? I come from a huge family—my father had 12 brothers and sisters, and they all had kids and they had kids. He's told me, 'We've all paid into things with our family and nobody's drawn disability, so don't worry about it.'" 

Of course, we wonder about Max's future, whether he will ever live alone or get married. What will be will be. Everyone has a place in the world. Some people are meant to hold big jobs. Some people make you happy and smile. Max brings pure joy and love. He has taught me to slow down and appreciate life, as seen through his eyes. He's taught us what's important, why my husband quit his job for a year as a market data analyst to stay home and help with Max.

Everyone who knows Max loves him. He is a blessing. I think I'm lucky: How many mothers still have their 13-year-old son wanting to sit on the couch, have mommy time and cuddles, and not be afraid to show love and affection?

Over the years, people have often said to us "God only gives you what you can handle." But last night, I said to my husband, "I think God finally thought the Begleys have had enough!" The community rallying around us has been amazing, the outpouring of support is awesome. It puts your faith back in humanity: Yes, people are generally good.

Tuesday, August 27, 2013

9 signs you're SO ready for the kids to go back to school

Your child asks if you can get her a Rainbow Loom to make bracelets out of overpriced mini colored rubber bands and you RUN, not walk, to your computer and order it for $18.99 from Amazon Prime just so she will have something to DO because you might just have a breakdown if you hear the words "Mommy, I'm booor-ed!" one more time.

You are on the verge of running out of sunscreen or bug spray and are conducting an evil experiment to see if the last dregs could possibly get the kids through Labor Day.

You have decided you actually don't mind hunting down the dozens of items on the classroom shopping lists because it means the kids will be that much closer to going back to school.

You are totally ready to trade in getting-lice-at-camp phobia for getting-lice-at-school phobia.

You have lost all enthusiasm for making conversation about the theme of your child's birthday party/his favorite Disney character/whatever your child is fond of talking about. In fact, you have kind of lost all enthusiasm for making conversation, period.

You start reminiscing about those days in grade school when you returned to school and your mom put you on the school bus and waved goodbye and you were wearing that cute new dress and those new shoes and your hair was in pigtails and OH MY GOD THAT WAS SO LONG AGO I AM GETTING OLD AND I REALLY NEED TO HAVE MY LIFE BACK SO I CAN RELISH IT, THE KIND OF CUSHY, RELAXED LIFE WITH TENNIS LESSONS AND PEDICURES AND LUNCH AT BISTROS WITH FRIENDS THAT I'D LIKE TO IMAGINE I HAVE BUT THE LIFE THAT INVOLVES THE KIDS BEING BACK AT SCHOOL WILL BE MORE THAN FINE! GET ME BACK THAT LIFE PLEASE PLEASE PLEASE!

You toss most of the kids' camp projects, in preparation for the onslaught of school projects. Most of which you will also toss.

You get a notice about parent back-to-school night and for once you are giddy with anticipation for a parent school activity.

There's a little chill in the air at night and you like it. School is coming! School is coming! Hooray!

Image: Flickr/isox4

Monday, August 26, 2013

When life gives you a lemonade stand...teach kids about money

Sabrina's been wanting to do a lemonade stand all summer long, and we finally got around to it this weekend. Max was into it, too, both because he loves lemonade and he's been wanting to raise money to purchase batteries for the Cars 2 Talking Lightning McQueen he wants for his birthday (so considerate of him).

I had it in mind that we'd donate money to a charity. Then I read about Lief, a 5-year-old with cerebral palsy whose parents are fundraising to cover his therapy this fall at the Anat Baniel Center in L.A. I talked with the kids about him, showed them photos and explained that Lief has CP, like Max, and he needed to get therapy that cost a lot of money. We decided we'd give most of the proceeds to him. "That's nice!" Max said. 

Until this year, Max didn't care much about money one way or another. He knew the different currencies, but it took him awhile to get that money can buy stuff people need and want (I suspect the Lightning McQueen car qualifies as both for him). I thought donating money to Lief would help him better understand that we can give money to help other people. 

At the end of last summer, I'd snagged a Discovery Kids lemonade stand kit on sale at CVS, so I just hauled it out of storage. I hate it when the cardboard box proclaims "Easy assembly!" and it takes you and your husband a good 15 minutes to figure out, leaving you feeling like the world's biggest blockheads. 

What to charge was a big debate. If a cup cost $1, the kids and I discussed, they could get a higher price—but if they sold it for fifty cents, they could sell more cups.

Their first major business decision

Getting it all together

Taste-testing (Max downed several cups, just to be sure)

Waiting for customers


I nearly keeled over from all the cuteness. Also: They got along amazingly well, a rare feat. When people asked how much a cup cost if they didn't notice the sign, Max would say "eh-eh ense" and Sabrina would translate (we didn't bring the iPad/speech app to avoid it getting baptized by lemonade). Sabrina would hold the cup, Max would pull up the tab on the jug's dispenser to let out lemonade and add a straw, and she'd hand it off. 

Me: "Sabrina, can I get a discount on a cup?"
Sabrina: "No, but you can have two straws!" 

When people asked if we'd made the stand, I'd say "We bought it ourselves!" and when they asked if we'd made the lemonade, Sabrina would say "We mixed it ourselves!" (Thank you, Country Time.) One neighbor said it was the best "hand-mixed" brew ever. 

The kids drank so much of the stuff I think they'll be on a sugar high till they go to college.

Bicycle break

Cute dog break

We were out there for a few hours. We met two families in our neighborhood we'd never seen before, an unexpected bonus. The kids raked in $20; they each kept $2.50, and we went online to Lief's YouCaring page and donated the rest.

Max put his money away in his Cars 2 wallet. Sabrina is saving up to get a dog (well, this week, anyway; next week she might be back to wanting a baby). Meanwhile, both kids are asking when we can do this again. I sense a fall hot cider sale coming on.

Friday, August 23, 2013

Special Needs Blogger Weekend Link-Up: Voila!

It's another Special Needs Blogger Weekend Link-Up, guaranteed to give you some good reading material for the weekend because I am quite sure you otherwise have no idea how to fill up your time.

The idea

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

What to do

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

Like this: Love That Max: Sabrina, Quit Teasing Me I'm Donating You To Goodwill

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, August 22, 2013

Screw the special needs haters—let's teach people well

Perhaps your heart started pounding faster, as mine did, when you read the now-infamous hate letter sent to the mom of 13-year-old Max, who has autism.

Particularly horrific:

"That noise he makes outside is DREADFUL!!!!!!!!!! It scares the hell out of my normal children!!!!!!! When you feel your idiot kid needs air, take him to the park you dope!!!"

"He is a hindrance to everyone and will always be that way!!!!!! No employer will hire him, no normal girl is going to marry/love him and you are not going to live forever!!"

"Do everyone in our community huge a favor and MOVE!!!! VAMOSE!!! SCRAM!!!!! Nobody wants you living here and they don't have the guts to tell you!!!!! Do the right thing and move or euthanize him!!!"

Like many, I've felt pained for Max and his parents, Karla and Jim Begley; the father spoke of being scared for his son's safety in a TV interview, the mom cried. Their community in Ontario, Canada has rallied around them and local police continue to investigate.

No matter what happens, this woman will never be able to escape from herself. She has to live with that hate, that poison, inside. How it must suck to be her. How sad for her children.

Once I got past the seething stage, I got a grip. We can sit around fuming and despairing over the special needs haters of the world, or we can do whatever's in our power to help people better understand and respect those with special needs.

Parents of kids with special needs do this all the time. While extreme intolerance like this is rare, we regularly contend with misunderstanding about special needs, ignorance and discomfort. When kids or adults aren't sure how to act around our children, we bridge the gap: "Hi! He'd love it if you said hello," or, simply, "This is Max." Once there's an interaction, it's easier to help people see how in many ways our kids are just like others—and to explain their disabilities, if the conversation goes there.

Some of us try to make a difference by raising awareness about language people use. When words like "retard" get flung around, even jokingly and even when not used as an insult, they fuel disdain for people with intellectual disability. It's a nasty word—exactly the one the hater used when she wrote to Karla Begley, "You had a retarded with it...."

"That's so retarded!" a relative remarked recently, when he was visiting our house. "I can't stand that word—it's offensive," I said. "It perpetuates the idea that people with intellectual disability are losers or stupid. Please don't use it." He instantly got it, and we moved on. Obviously, speaking out against a word is not the answer to changing perceptions of our kids (as if), but it is one more way to raise the respect bar.

For sure, it isn't easy to deal when our kids' behavior irks people. The other week, Max had a sensory meltdown in a restaurant and let out a piercing screech. We were seated next to a table of women—it looked like girls' night out—and they all stared. I knew they were thinking he was being a brat. When Dave took Max for a walk, I leaned over, apologized and said he had special needs and sensory issues. One woman asked what about the restaurant had prompted that reaction, and we got into a discussion about how a new setting, the din in the room and even dim lighting could unnerve Max. "I never knew about that," she said. Sometimes, all you can do is focus on calming your child (and yourself) down; sometimes, you can help people understand where it's coming from.

I don't have a Gandhi thing going on; the patience and goodwill aren't always there. At times, I get ticked off by the stares and it takes a lot of self-restraint not to snap "What's your problem?!" But over the years, I've learned that I'll ultimately do more good for Max if I can get past my defensiveness and help people better understand his needs—and the wonderful kid he is. One person at a time, I'm making a difference. One person at a time, you're making a difference. All of us together, we're making a difference.

If you don't have a kid with special needs, I beg you, teach your own children well. Encourage them to say "hi" at the playground to kids with disabilities, as they would with other kids. Answer their questions—explain why a child with autism may flap his arms or make sounds or why a kid with cerebral palsy may walk the way he does—but also talk about the ways kids with disabilities are like them. Every one of us has the power to educate, enlighten and eye-open.

Karla and Jim Begley, we are thinking of you, and doing our part to help. I hope they figure out who wrote that letter, for your peace of mind, but I also hope you take comfort in the ways you and your Max have surely changed people's perceptions of kids with special needs. You are surrounded by a fellow army of parents marching on, right past the isolated haters, determined to make the world a more welcoming, respect-filled place for kids with special needs.

Image: Flickr/noticelj 

Wednesday, August 21, 2013

Kids With Special Needs Around The World: France

This is another guest post in the Kids With Special Needs Around The World series. Lynn lives in a rural area of France with her husband, a teacher; she's mom to Eva, who's almost 4, and Joseph, 16 months old. Eva has developmental delays, epilepsy and sight problems and an extreme case of cuteness. 

Moving to France from England eight years ago for a teaching job was supposed to be a temporary measure, but here I am still. How life has changed! I now have a French husband and two beautiful children: baby Joseph and our very special Eva. We know Eva is awake in the morning when we first hear her singing to herself in bed, her songs monosyllabic but increasingly melodic. 

Her difficulties were apparent pretty much from birth, despite a healthy pregnancy and straightforward natural birth. We still have no diagnosis and are awaiting genetic results. Although she has very little language, her understanding (in both English and French) is pretty good. She has always struggled to make her muscles obey, first smiling back at me at about 9 months old. Now she can run, grin, is starting to jump and has an uncanny ability to identify and connect with the funnest person in the room. She has learned to love cuddles and bedtime stories, dancing and music. 

When Eva comes in grinning to present me with a fresh egg or a tomato from the garden, I feel a rush of how lucky we are, and all the more so for having wondered if we would ever share so much joy. 

I feel she gets a lot from being a big sister; it has taken her a long time to express joy, so hearing them giggling together is probably the best sound in the world, usually hiding behind the curtains or sitting on each other. Having a second child was a wonderful decision for our family. Eva is a huge fan of the UK TV show Something Special, for kids with special needs (although typical kids love it too) in which the presenter signs along with Makaton as he talks. It's a great show and they both love it and learn a lot from it.

I have essentially given up work to care for the children, but teach French as a sideline to keep a foot in the "typical" world, where I change no nappies and see no therapists (it helps to keep me sane). 
We live in a very rural area, over an hour's drive from the nearest cities, which has meant a lot of kilometres getting to appointments and therapy. In our experience, there is a huge amount of special needs support available in France. Our pediatrician referred Eva for physiotherapy from about 5 months old, which she continued until she was 2, when we pushed for her to be taken on by the local CAMSP therapy centre, where a team of specialised professionals (paeditrician, speech therapists, physical therapists, psychologist, OT) work in conjunction to support children from birth up to 6 years old.  

At three years old, Eva started mainstream school four mornings a week, with the help of a lovely and conscientious one-on-one assistant. Her therapy was transferred to a local therapy centre called the SESSAD (similar set up to the CAMSP, but the therapists travel out to work with children at school or at home). Children usually start school at 3 years old in France, although it is not obligatory until 6 years. Since new legislation in 2005, more children with special needs go to mainstream schools, with one to one assistance if necessary. That being said, teachers are rarely trained to cope with the challenges they may face and so the child's and parent's experience varies drastically. 

Fortunately, our little girl's teacher is inclusive, understanding and intelligent. Not all families are so lucky. The general policy is for inclusion in mainstream schooling up to 6 years old, at which point the child's situation is assessed to decide if they would progress better at a specialised school or in a separate supported class in a mainstream school. Children with greater needs sometimes start at specialised establishments earlier.

Eva currently sees 5 different therapists on a regular basis, some through the therapy centre and some privately (speech and language therapist, educational therapist, physical therapist, orthoptist, psychologist and occasionally the psychiatrist too). All this is paid for fully by the state. We applied for this support through the MDPH, a local government body which promotes equal access and controls disability funding and provision for the area. 

There is a huge application form to complete each year, as in addition to therapy, the state can provide financial support for families who have reduced or stopped work to care for special needs children up to 20 years of age. They also provide financial aid taking into consideration costs such as specialized equipment, child care and even napes if the child is not potty-trained after 3 years old. As everywhere, there is talk of cuts, with the possibility of reduced services and funding. But I don't find it constructive to dwell on what might (or might not) happen in the coming years. We will cope—what else do you do? 

It is hard to define how society treats disability here, as it is so subjective. When uncomfortable or afraid, Eva tends to withdraw and tremble, and sometimes gets distressed; I'd be curious to know how passers-by might interpret it, but my guess is her "disability" is not that obvious. It becomes more so when she is elated, as she bursts with high-pitched squeaks, shrills and trills of exuberance. It's as weird as it is wonderful and the most common expression on people's faces is surprise. I find children often react most harshly to her idiosyncratic behaviour, perhaps as they have less life experience to help them understand her differences.

Strangely enough, the most prejudice I feel to have encountered is from Eva's therapy centre itself, where some professionals (in particular the crusty old psychiatrist) seem to hold to an old-fashioned and condescending notion about the sort of parents that have special needs children. Their information leaflet bills them as a "Centre for the Intellectually Deficient," a painfully blunt message, but as the nearest alternative is 50 miles away in the city, we have thickened our skins. 

I was recently invited, and then denied access, to the annual interprofessional progress meeting they were conducting about my daughter. They left me sitting for 40 minutes in the waiting room, overhearing snippets such as "The mother thinks..." through the wall, before being letting me in for a brief summary. The initial justification was that a) they have always done it that way, and b) the sort of parents who have disabled children are often part of the problem and therefore you cannot openly discuss their child in front of them. 

As far as I can gather, they are under no legal obligation to include the parents, and yes, I find that alarming and wonder if (and hope that) my information is wrong. I wrote to the director of special services for our region (who chaired the meeting) to express how distressing and disempowering I had found this deliberate exclusion. I was bowled over by her response: She thanked me for sharing my feelings and agreed to change their working practices for the future, so that it would never happen to another family here again.

It is commonly said in France that being the parent of a child with special needs is "le parcours du combattant"—an assault course. I am learning how true this is, but feel that each new challenge makes us stronger. It is disheartening to have to fight battles with the people who are supposed to be helping us, but equally heartening that when you dare to speak up, you are often heard. Last year we spent three times as many hours in the car going to therapy, for less contact time, albeit with more organised and informed therapists. 

It is an ongoing quandary: Do you sacrifice time and quality of life for marginally better treatment in the city, or make do with the local guys? We travel further for the speech therapist, who is excellent, and needless to say, go to the city for the gamut of neuro specialists. If we relied on the advice and information of the health professionals alone, I think we would be struggling, but fortunately we have a supportive network of friends and family who have introduced us to other approches, like Intensive Interaction—which really opened the door to communication with Eva.

As I am English and Eva's father is French, our bilingual family set-up has naturally been a source of doubt and concern as we realised the extent of Eva's communicational challenges. Her SLTs, the current research and a host of advisors say we should each stick with our mother tongue. Her strong receptive language capacity gives us hope, and she uses PECS in French, which a close friend (Eva's fairy godmother) helped us to set up and which has been a lifesaver for us all. I still have a sneaking suspicion that she would be saying more words if we all spoke the same language, but unfortunately, life is not that simple and those people in the world who love her most deeply and impact her development most greatly are fairly evenly spread across two cultures and languages. I don't want to cut her off from half of her "Go Eva go! /Allez, Eva, allez!" team.

One challenge for me in this rural corner of France is the lack of support groups. In my experience, people are generally kind and supportive and I have learnt to avoid or ignore the pitying ones, but sometimes you need that buzz of recognition, of shared experience. Like when the mums at the school gate are complaining about how their kids never stop talking and I feel like I'm on my very own planet. Even meetings like mother and baby groups are a rarity here, so special needs parents' groups are a tall order. (If there are any readers out there in France, get in touch!) Connecting with parents online helps me feel less isolated. Our kids are just kids, trying to have a good time, giggle, get messy, connect, be loved and enjoy life. Like any kids, anywhere.

Previous Kids With Special Needs Around The World posts:

Tuesday, August 20, 2013

The merry-go-round incident: Letting our kids flex their independence

Max has been wanting to do more things by himself lately. This is amazing. This is also sometimes scary.

We were at a drive-in movie the other night that had a playground with a merry-go-round. Max stood there, watching it and smiling. Then he wanted to help push it. There were more than a dozen little kids on it, and one big kid pushing them, and I asked him to go slow so Max could do it without falling. He obliged.

Suddenly, Max wanted to go on the merry-go-round. Alone. And I was torn. Max has pretty decent balance, but it is not totally there. I knew there was a chance he could fall if I let him go on it.

I didn't have much time to think, though, because Max was trying to clamber on and all the kids were watching and waiting. And so, I lifted him up onto the seat. I pushed him back as far as I could. I wrapped his fingers around a rail and said, "Hold on tight!" Then I stood back and watched, nervously.

Max had a gleeful smile. Then the wheel started whipping around, fast. Max whirled by me, tilted to one side, a startled look on his face.

"STOP!" I yelled. "STOP!" I rushed over to try and grab him, but it was too late. Max fell off.

The new Cars 2 backpack he's been wearing everywhere except the bath saved him. He fell on his back, and it padded his fall.

Max wailed, but he was unharmed. I choked up as I held him. I wasn't just shaken—I felt awful that I'd let it happen. He could have really gotten hurt. After he calmed down, we walked back to the car, then settled in to watch Planes (he looooooved it).

I'll be making more and more decisions like this in the upcoming years. As eager as I am for Max to flex his independence, I'm going to have to step back and give things more thought, as I should have done that evening. When spontaneous activities crop up like the merry-go-round ride, I may have to jump on with him whether he likes it or not—until he's ready to ride alone.

Monday, August 19, 2013

Help! My child wants a child

Last week, we spent the better part of a day driving to Cape Cod. This is pretty much what we heard for most of the ride from Sabrina:

Sabrina: "Mommy, can we have another kid?"
Me: "Daddy and I will think about it!" [As we have been for several years....]
Sabrina: "But Mommy, I want us to have a baby!"
Me: "This isn't the type of decision we can make right now!"
Sabrina: "Oh, OK."

[5 minutes later]

Sabrina: "Mommy, other families have three kids! We should too!"
Me: "Daddy and I will consider it."
Sabrina: "Mommy, don't you want another baby?"
Me: "Yes, I do, but this is a bigger decision Daddy and I have to make."
Sabrina: "OK, but can we have one?"
Me: [Pulling my hair out]

[10 minutes later]

Sabrina: "Mommy, can we have another baby?"
Me: "Sabrina, please, stop asking. This is something Daddy and I will decide."
Sabrina: "I know, but please please please can we have one? Max still needs help with stuff so you can just take care of a baby too!"
Me: "That's an interesting point. Honey, listen, I know you would like another brother or sister and maybe someday we will have one but I don't know."
Sabrina: "I really want one!"
Me: "I can tell! But this isn't something you can control, so please stop asking."
Sabrina: "Well, you can adopt!"

[About 3.5 minutes later]

Sabrina: "Mommy, I waaaaaant another baby!"

[Repeat repeat repeat repeat repeat repeat repeat]

At the restaurant we stopped at for dinner:

Me: "Sabrina, do you want a salad with grilled chicken?"
Sabrina: "You KNOW what I want."
Me: "Yes, but what do you want for dinner?"
Sabrina: "A baby."

[5 minutes later]

Sabrina: "How do you get pregnant?"
Me: "Like we've talked about: The Mommy and Daddy love each other and make a baby."
Sabrina: "But really what happens?"
Me: We've talked about that too! The Daddy's penis lets out a seed inside the Mommy's vagina."
Dave: "HONEY!!! She is too young for that!"
Me: "Um, no, she's not."
Sabrina: "Ewwww, I can't believe you said that at dinner!"

That actually succeeded in clamming her up.

[Back at home several days later]

Sabrina (calling from the mall): "Mommy! Can I get a dog? They are doing free dog adoptions here!"
Me: "No, honey, I'm sorry, we have to think that over."
Sabrina: "OK. Then can we get a baby?"
Me: [Pulls out rest of hair.]

Friday, August 16, 2013

Special Needs Blogger Weekend Link Up: Good Summer Reads Edition

It's another Special Needs Blogger Weekend Link-Up, almost like a vacation! Um, not exactly, that just sounded good. You will, however, get to read some awesome posts.

The idea

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

What to do

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

Like this: Love That Max: I Have Chocolate Milk Running Through My Veins

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, August 15, 2013

The boo-boo face, never before captured on film

Years ago, a friend with older kids told me to snap pictures of my kids when they were crying. She said someday, I'd want to remember that look.

This is the sort of advice that gives you pause, because they only thing you are thinking when your child is crying is PLEASE STOP PLEASE STOP PLEASE STOP. It's not typically an endearing form of behavior. Well, except for when Max does what we call his boo-boo face, which makes me melt every time. He juts out his bottom lip, wells up and generally looks pitiful.

Max has been doing the boo-boo face since he was a baby, and only does it when he is very sad. Otherwise, if it's a sad-mad type of reaction, he lets out this charming screech that makes you fear for your eardrums.

In this shot, it was raining outside and I'd just told Max we wouldn't be able to go to the rides. I knew he'd make the face the second I told him, and I had my camera ready. He did not disappoint. I did feel a little mean snapping it as he sniveled but someday, I am sure, he will thank me. Or sue me.

Have you taken pics of your kids crying?

Wednesday, August 14, 2013

Easy, kid-pleasing dinner recipes wanted!

Max's favorite dish is macaroni and cheese pie, as he calls it—a casserole made in part with butternut squash. Sabrina is onto me. "I don't like that," she announced the other day, and when I asked why she said, "It has squash." I said, "Who told you that?" and she said, "You did." Now, unless this child slipped truth serum into my coffee, I wouldn't have ever mentioned that. Which makes me wonder whether she has been reading this blog. (Sabrina, if you are reading this blog, go clean your room right now.)

The kids are pretty good eaters, and they do like butternut squash ravioli, pierogies, salmon, garlic chicken and lasagna for dinner. They are, however, very weary of meatloaf.

I'm not the most adventurous cook in the world, unless you count my wondrous abilities to heat up Trader Joe entrees. I could really use some fresh, EASY recipes. Especially ones that make enough portions to last all week. Did I mention EASY? Ideally, they can't be too chewy or crunchy, because Max can't handle foods like that.

If you have a tried-and-true recipe that your family loves, I'd so appreciate it if you left it below or shared a link to one on a site. 

(Sabrina, if you are still reading this blog, go look up some recipes.)

Image: Wikimedia Commons/National Archives and Records Administration

Monday, August 12, 2013

iPad 2 giveaway for kids with special needs: back-to-school special!

Every single day—and I mean every—I am grateful for the technology that enables Max to communicate what's in his head (hello, iPad and speech app). I'm also awed by the ways cutting-edge technology is benefitting early detection and early intervention for kids with special needs, enabling them to reach their potential.

I'm a blogger ambassador for CVS Caremark All Kids Can, and recently found out that a chunk of the $2.6 million in grants awarded to 66 non-profits by The CVS Caremark Charitable Trust went to some stellar tech initiatives. Read about them, then enter to win an iPad 2 for your child!

   • The grant for Marcus Autism Center in Atlanta will support an innovative eye-tracking technology that is helping to diagnose children with autism earlier on in life. It's truly amazing; in research, scientists showed film clips of social interactions (like kids chatting) to children. Then they tracked where on screen their eyes went—kids with autism tend to focus on people's mouths, while typically-developing kids look at the eyes, reports this Wall Street Journal article.
   • Family Service of Rhode Island is using their grant for, among other things, assistive technology equipment to be used for children with communication challenges.
   • The New England Center for Children, a school for children with autism in Southborough, Massachusetts, has created the Autism Curriculum Encyclopedia (ACE). It's a web-based, interactive toolkit for special education teachers, with more than 1300 critical skills for kids with autism. (All together now: wow!) The CVS grant will support ACE's technical development. 


Since CVS Caremark truly believes in helping all kids on their path to better health, one winner will receive an iPad 2 with Wi-Fi + 3G worth $529. The giveaway ends on August 21 at 12:00 a.m.

How to enter
To enter you must enter via Rafflecopter and leave a comment below about how an iPad will benefit your child. No need to get into detail, share what you want. Additional entries can be gained daily by tweeting about the giveaway.

Winner determination
• One winner will be randomly selected 48 hours after the giveaway is closed. I will email the winner at that time.
• If I do not hear back from the winner within five days, another winner will be chosen.
• The winner will be asked to provide a letter of need from a speech therapist or doctor in their child's life, explaining how an iPad could benefit the child. The letter from the therapist or doctor must include her qualifications and contact information so that he or she can be called for verification.
• If the winner does not produce a letter from their child's speech therapist or doctor within two weeks of being informed of the win, another winner will be chosen.

Getting the iPad 2
• The winner's iPad 2 will be ordered within five business days after I confirm information with the child's therapist or doctor. The iPad 2 will be shipped directly to the winner. The arrival date will be based on Apple's estimated arrival time.

For more rules, see "Terms and Conditions" below. Good luck!

a Rafflecopter giveaway


This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

Sunday, August 11, 2013

11 summers of Max, 11 more summers for a child in need

This is the 11th summer of Max's life. 

11 summers since we took him home from the NICU after his stroke, so anxious about his future.

11 summers of being warmed by his sunny smile.

11 summers of seeing him eating ice-cream, drinking lemonade, splashing in the pool, going on kiddie rides and enjoying the seasonal pleasures, just like any kid.

11 summers of thinking he looks so handsome in a navy polo and khaki shorts.

11 summers of being wowed by his accomplishments, even the small ones a Big Deal.

11 summers of watching him roll down our street—first in a walker, now on a bike—and never once taking it for granted.

11 summers of hearing new sounds and words, ones doctors weren't sure would ever come. Latest: "eesah!" ("pizza!") 

11 summers of thinking that the season makes him grow super-fast.

11 summers of sitting with him on the front porch at dusk, mesmerized by fireflies and just loving being alive.

11 summers of gratitude that he is proving the doomsaying doctors in the NICU wrong. 

Today, I'm also thinking about kids who need a shot at reaching milestones—and living life. Every 20 seconds, a child dies from a vaccine-preventable disease. Every year, 1.5 million children die of diseases that could have been prevented by a vaccine. Some moms walk up to 15 miles just to get their children vaccines. Some moms don't have access to them. 

This post is inspired by Shot@Life, an initiative of The United Nations Foundation that educates, connects and empowers the championing of vaccines as one of the most cost-effective ways to save the lives of children in the world's most hard-to-reach places.

Throughout August, 31 bloggers are participating in Shot@Life's Blogust, writing every day about moments that matter and raising awareness about vaccines. For each comment on this post and the 30 other posts, Walgreens will donate a vaccine (up to 50,000 vaccines). 

That's right, ALL YOU HAVE TO DO IS COMMENT AND A CHILD WILL GET A VACCINE. It can be as short as "Glad to help!" It can be longer. As they say, size doesn't matter.

We can change the reality of children dying from preventable diseases. We can help save lives with a few pecks of the keyboard. So please, for the love of children, leave a comment.

Sign up here for a daily email so you can quickly and easily comment and share every day during Blogust! Stay connected with Shot@Life at, join the campaign on Facebook and follow them on Twitter.

Friday, August 9, 2013

Special Needs Blogger Weekend Link-Up: It's Hot!

It's another Special Needs Blogger Weekend Link-Up: Welcome back! And if you're new here, glad to have you.

The idea

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

What to do

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

Like this: Love That Max: Mommy Needs Vacation

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, August 8, 2013

Motherhood, pretty much summed up

Which of the following did I not do this week?

• Stayed up till 1:00 a.m. in a coffee-feuled marathon to catch up on house chores.
• Proceeded to make cucumber salad till 1:30 a.m. with cukes from our neighbor's garden because, heck, what else did I have to do at 1:30 a.m.?
• Inserted not one but two contacts into my left eye in the bleary-eyed morning.
• Almost let Max walk out the front door to his school bus without shoes on.
• Got in touch with a bunch of carpenters for price quotes on redoing our house's warped soffits (if you don't know what a soffit is, consider yourself lucky).
• Raced out of work, drove an hour and a half to see Sabrina perform a seven-word part in her camp's production of Lion King, ignored her glares because she hates when I take pictures and nodded off during Hakuna Matata.
• Watched Herbie Rides Again for maybe the 50th time with Max. (No exaggeration.)
• Had extended discussion with insurance company rep about AWOL claims and actually said, "I don't understand how these forms keep going missing. Is this some sort of conspiracy?"
• When faced with extreme meltdown over empty box of Cocoa Krispies, hid in the bathroom.
• Called pediatrician's office to send prescriptions needed for Max's school; got neurologist's office to call in the compounded medication necessary to prevent seizures; begged pharmacy to send the stuff over asap so it's here before vacation; realized kids also needed more prescription vitamins because the damn water has no fluoride so called them in too.
• Came home from a rare weekday night out with a friend to find Sabrina asleep in our bed. I kissed her, figuring I'd just let her stay. She woke up and murmured the words every mother wants to hear: "Mommy, kids in our camp have lice!" And then she fell back asleep. On my pillow.
• Downed bowl of cold leftover mac 'n cheese for dinner because even putting it in the microwave seemed like too much effort.
• Got entirely too excited when a colleague I haven't seen in 15 years said "You look exactly the same!"
• Discovered someone had placed Max's braces in the recycling bin. Perhaps someone named Sabrina.
• Touched up a turquoise pedicure with a Crayola crayon.
• Let Max sit in the bath tub for a half hour kicking his feet and playing that ever-popular game, Tsunami on the Bathroom Floor!
• Deflected Sabrina's persistent "Can you have another baby?" requests and then, when we were in the Cold Stone Creamery parking lot and she asked "How do you get pregnant?" I replied with, "What flavor of ice-cream are you getting?"
 • Spent 10 minutes of pre-camp (Sabrina) and pre-school (Max) a.m. time searching online for a Cars 2 backpack with both Lightning McQueen and Francesco Bernoulli for Max.
• Spent another 5 minutes trying to start a lanyard stitch for Sabrina and acting like I knew what I was doing.
• Unearthed juice pops dating back to the Paleolithic Era in the netherlands of our freezer.
• Exchanged dozens of emails with Max's therapists.
• Filled out eleventy billion school forms.
• Panicked about buying school supplies.
• Figured out a solution to world peace.


Wednesday, August 7, 2013

$100 Kohl's gift card giveaway—and hot fall picks

I think it was my friend Betsy the Bargain Fiend who first introduced me to, sponsor of this giveaway. For three years now, I've been doing almost all of the the kids' back-to-school and spring clothes shopping there. I love it not just because I can shop at 11:30 p.m., but because the clothes are totally cute and good quality. There's always some sort of sale going on, and free standard shipping with a $75 purchase. Browsing is easy—you can search by type of clothes, size, brand, occasion, color, price and trend. Max likes the site because he got his Cars 2 underwear fix there, except he's grown out of them. Tragic, I know.

Sabrina's new favorite sport is shopping. She is always finding stuff she wants to get online, and showing it to me on her computer screen. So she loved sitting down together to pick out some new fall stuff. Max, being a boy (and being a boy who only cares about Cars 2 merchandise) is glad to let me be his personal shopper. Happily, the purple obsession has died down which has vastly expanded our gear repertoire.

Check out the kids' picks, then enter to win a $100 gift card.

Some Max selects:

A boy's gotta have khakis. 

"Addy! Addy!"
(Translation: Daddy has one just like this and I love it when we dress alike.)

I got this for Max in four colors—it's sturdy cotton and studly. 

"I'm going to be a chick magnet in this!"
(OK, Max did not actually say that because he is far too modest.)

Not from the fall line, but timelessly appealing.

Some Sabrina selects:

"I'm wearing this on the first day of school! And everyone's gonna like it!"

"I love jeans and I like them in my jacket!"
"Ohhhh! They're soooooo cute!"
Converse Chuck Taylor All-Star Shoe

"I thought about getting the purple one but I think Max might want to wear it even though he's not that into purple anymore but who knows! Orange is good cause I won't have to hide it!"
Mudd Lace-Sleeved Top

"Mommy said to get this because she says it is a good reminder so next time I am acting angry I can just look down at my chest."


Leave a comment below about what you're loving on for your kid, or just what kind of clothes your kid most needs for fall. You can get additional extra entries with Twitter and Facebook follows. The giveaway ends on August 22 at 12:00 a.m. (see "Terms and Conditions" for more information). The gift card can be used online or in stores. Good luck!

a Rafflecopter giveaway

Update! The winner is....

Disclosure: I received compensation for the post, but the opinions and shopping love are all mine. 

Tuesday, August 6, 2013

Help for moms who kiss their kids too much (actually, no help, but perhaps you can relate)

Last night, Dave was tucking Max into bed and I heard Max giggling. I poked my head in. Dave had showed him how to nose kiss, and Max thought it was a laugh riot. "Ohmmmy!" Max said, and I leaned over and rubbed noses with him. And then, I kissed his cheek again and again and again until Dave was all, "Hey! My turn!"

I am greedy about kissing the kids; I can never get enough. This I inherited from my mom, who was always kissing me and my sister. I once discussed the habit with an office friend. "I basically make out with my kids!" she said, and I knew exactly what she meant. I will kiss the kids at any given opportunity: when they're on the couch watching TV, when they're buckled into the car, when we're at the mall riding the elevator, when they're sleeping. (Yes, I do.) (And if you call me creepy, I'm going to kiss you right on the lips.)

Sometimes the kids kiss back, sometimes they sit there glued to Good Luck Charlie because, whatever, it's just another spurt of mommy kisses. I don't believe there are any intervention programs for moms who kiss too much, although I suspect my children might start one someday. Back when they were babies, I'd literally nibble on their chubalicious limbs. I no longer do that, mercifully for them, since there's very little chub left. Excluding Sabrina's hands, which still have pudge and dimpled knuckles and are too delicious to resist.

Perhaps I'm making up for being away at work all day, where there is nobody I'd particularly like to kiss although they are lovely people. I'm still so grateful for Max's kisses, because it took a long time for him to learn how. He favors the open-mouthed, slurpy kind, sometimes planted on my stomach, sometimes on my cheek.

Max particularly likes to give kisses when he breaks something in the house, because he figures if he makes me melt I won't get upset. He is right. I like to tease him that I am going to pour ketchup all over him and eat him up (he considers ketchup a food group), but then he wisely points out that I should save the ketchup for his mac 'n cheese and I oblige.

With Sabrina, I'm catching up on lost time because as a tot she was stingy with her kisses. In fact, one of her first phrases was "NO TISSES!" I had to practically beg for a good-night kiss. Now, she calls me back into her room for more after I leave. I tell her that I'm aiming to kiss every single one of her freckles, which bloom during the summer. Sometimes, we play a kissing game in which we have to guess the type of kiss: vacuum kiss, ice-skating kiss, woodpecker kiss.

Too much of anything—carbs, sunbathing, reality TV—is never a good thing. But kisses? I think I get a free pass. Max and Sabrina are getting older, and there's going to come a time when they will be over me and my kiss-y ways. Until that day, I am cramming in those kisses.

Monday, August 5, 2013

Dear President Obama: My child with special needs has so much more than "grit"

Dear President and Mrs. Obama,

I was excited to hear that you're going to be honorary chairs of the 2015 Special Olympics World Games, scheduled to take place in Los Angeles starting July 25 2015. This is B-I-G. The games, the Special Olympics announced, will include about 7000 athletes with disabilities from 170 countries around the world, and an anticipated 500,000 spectators. You'll bring extra attention to what's going to be the largest sports-and-humanitarian event anywhere in the world that year.

You expressed admirable enthusiasm in your video statement: "The athletes coming to these games represent the grit and determination that is at the very root of the American spirit. They keep working when the challenges seem greatest...they see opportunity where some see limitation. They represent the very best of the human spirit."

Now, this is a very true sentiment as I know from raising my son, Max, who has cerebral palsy. I have never seen so much determination packed into one little body. I can picture Max as a two-year-old commando crawling along the floor of our home, like an army soldier, getting around as best he could when his arms weren't yet strong enough to hold him up. I can picture Max today going up stairs, carefully holding the rail, every move measured. Of the many kids with disabilities I have come to know over the years, a can-do spirit is one commonality they share.

But with all respect here's the thing you—and many others—need to realize: 

Our kids have so much more than determination. Focusing only on their grit undervalues their abilities.

Athletes who compete in the 32 Special Olympics summer sports have real prowess. Like Abdel-Raman Hassan Al-Hemdan, a swimmer with intellectual disability from Saudi Arabia who is also partially paralyzed. At 10 years old, he scored gold medals in the 25- and 50-meter races at the World Summer Games in Shanghai. 

Obviously, this was quite the feat; his father has said that it took him a year of training to cover a distance of one meter. That's exactly what athletes do: They train. And then, the best of them win medals, as in any athletic competition. This is because they are both competent and able. This is something us parents of kids with special needs ache for others to see. As Abdel's father described his wins,  they're "a message to show the world the real abilities of this intellectually disabled child."

Parents of children with special needs are fully aware that our kids have real abilities. Not just ones that stand out in spite of their disabilities, but in their own right. Some may have athletic talents. Some may have creative ones. It depends on the kid, as it does with any kid. My Max has yet to compete in Special Olympics activities but he sure can run. That's not to say that in a race he'd beat other kids who do not have CP, but still, it's not just determination that's helping him sprint to first base when he's played on a Little League Challenger team.

This is something people tend to forget about kids and adults with special needs. They focus on how amazing it is that they're doing anything, period, let alone doing anything well. Would you ever release a statement solely about LeBron James' grit? Or gushing only about Lindsey Vonn's spirit? Would you use this as the lone description for any athlete this way competing in a national athletic event? I suspect not.

Our kids have to leap over many obstacles to get ahead in this world, and people do them a disservice when they focus only on their drive. So here's my simple request: When you chair the Special Olympics, give the athletes props for their spirit and skills. Encourage the world see all the abilities in their disabilities. Cheer them on as you would any athletes.

Your fan,

Ellen (aka Max's mom)

Image of Al-Hemdan: Special Olympics

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