Speaking of meeting, let’s meet some of this site’s new members!

New Members
Jessica Lais joined this week. She’s the mommy of 10-month-old Hudson who was born two months early and suffered brain damage. He’s a super cutie and you can see stories of his life and development on Jessica’s blog, Strong Like Hudson.

Katie is a new member who works with five adults with autism in a group home. She joined the group because she is interested in families that blog about special needs. You can also find her on Twitter.

Other new members include Kristin, whose daughter gave birth to a baby who suffered brain damage in the womb and is very new to this world of special needs, L. LaMarca whose 12 year old son has severe ADHD and Autism and Vicky whose 30-year-old daughter is developmentally impaired and bipolar.

Group Discussions
With new members, there are new members of groups. Heads up to the members of the IEP and School Discussion, Adoption Needs, Autism Support, Anything Goes, Ontario, and Life Beyond Limits-Raising Kids with Cerebral Palsy. There are new people to talk to in those groups!

In Anything Goes, the conversation about “Helping our kids cope with their differences” continued from last week. I’m sure there are many parents in this group who can offer more insight.

The Organizing Specialized group had a new conversation started by moderator, Leslie. Do you have any insight in hoarding behaviors for people who are on the spectrum?

Extras
There are so many ways to share on this site. If you have pictures you’d like to share, read this how-to guide to post a picture or two with all of us. I hope you all have a wonderful week. Thanks to each and all of you for reaching out and sharing your lives and knowledge with each other.

My daughter Sophie is sixteen years old and has had epilepsy since she was diagnosed at three months of age. Her seizures are refractory despite nearly twenty different medications, the ketogenic diet and many alternative and integretive therapies, and she is profoundly developmentally disabled as a result. She is non-verbal, and over the years we have tried many different forms of communication in an attempt to empower her to express herself and her needs. This has been a long and frustrating, often heart-breaking process, mainly because it is through speech and language that we define ourselves and other people. Both of Sophie’s younger brothers have witnessed thousands of her seizures and hate them, but they most often wish on birthday candles that she would talk. They have thrown coins into fountains, blown dandelions and wished and prayed that their sister would talk.

Last year, we had the great good fortune of receiving the services of a speech pathologist here in Los Angeles who specializes in augmentive communication devices. We had tried many of the voice output devices over the years, the Big Macs, the switches, the cumbersome plastic devices that broke quickly or ran out of batteries even more quickly, and nothing ever really worked for Sophie in a way that made us feel confident. There was little to no follow-up or consistency in the schools she attended and a shortage of qualified speech therapists, so when we received private funding, we jumped on it. The new speech therapist recommended the iPad for Sophie and some of its simplest programs to start.

Sophie has been working and playing with her iPad for nearly a year, now, and the going is rough and often inconsistent, but there are times when it all bursts forth, when those neurons seem to really connect and don’t spark and combust but rather hum with illumination. Several weeks ago was one of those days when Sophie got home from her first day of school and collapsed onto her bed. Her younger brother Oliver, aged ten, lay across the foot of her bed with all his papers from his first day of school, chattering to me about what he did and what they were going to be doing. When he stopped talking for a moment, I wondered aloud what Sophie’s day might have been like and then got up to get her iPad to find out. Sometimes, when her aide remembers, she’ll record Sophie’s “day” into the iPad so that Sophie can “tell” me. That day, probably because of the chaos of the first day of school, she did not, so I went to the YES/NO screen.

The YES NO screen is pictured above: when you swipe or tap the YES, you hear YES, and when you swipe or tap the No, you hear NO.

Well, that day Sophie and I had a real conversation, a conversation that inspired my son to stop chattering, look over at us with amazement and yell, “Sophie, you’re on fire!”

Here’s a bit of our conversation:

Me: Sophie, did you have a good day at school today?

Sophie: YES

Me: Did you see your friends?

Sophie: YES

Me: Was it hot today?

Sophie: YES

Me: Is Henry in the room right now?

Sophie: NO

This was when Oliver first looked up and stared at us. Henry is my other son, and he was in his own bedroom, doing his homework.

Me: Sophie, is Valentine a cat? (Valentine is our pet poodle)

Sophie: NO

Oliver’s mouth was literally hanging open at this point, and I admit to feeling shaken. This sort of clarity was not common; frankly, it was nearly unbelievable.

Me: Sophie, are you a smart girl?

Sophie: YES

That’s when all the Sophie rocks! sounded and even some tears fell.

What happens when you see people like Sophie communicating like this, struggling to communicate, to express their wants and needs and answers to questions, is a profound alteration in one’s psyche. It’s about nothing less than what it means to be human.

——

Invitation to webinar:

“Using Technology to Communicate with Your Developmentally Disabled Child.”

I am Elizabeth Aquino, a writer and mother living in Los Angeles with my husband and three children. My oldest, Sophie, developed a rare form of epilepsy when she was three months old, and despite many medications and treatments for her seizures, we have little to no control of them, and she is severely disabled as a result. Sophie is non-verbal, and one of the most difficult things her two younger brothers, father and I have found in our life with her is helping her to communicate and be empowered. As part of my work with Project Access and The Epilepsy Foundation of America, I helped to produce a webinar called “Using Technology to Communicate with Your Developmentally Disabled Child.” My colleague, Jennifer Bertram and I share our personal stories and successess with our featured speaker, Cindy Cottier, who provides an in-depth view of various communication tools and explains how the iPad, in particular, is used as a communication tool for children and youth with epilepsy and other developmental disabilities. There are wonderful resource pages and tips on portability and hardware, too.

We invite you to listen to the webinar and then join us in a live question and answer session on February 14^th.

You can listen to the pre-recorded webinar by clicking this link (no registration is required): http://connect.epilepsyfoundation.org/p32641212/

Next, join us for the live Question and Answer event where our three speakers will be available to take your questions and expound upon topics discussed during the pre-recorded webinar.

Register for the Live Q & A here: http://ncpawebinar2.eventbrite.com/

I look forward to meeting you and am happy to answer any questions. I can be reached at elsophie@gmail.com and blog at a moon, worn as if it had been a shell.

The short short version of the essay titled “Welcome to Holland” posits that discovering you have a special needs child is like getting on a plane bound for beautiful, sunny Italy but landing in Holland instead. At first, you’re disappointed because all your friends went to Italy and that’s what all your own expectations were based on, but soon you learn to appreciate Holland for the swell place that it is. (Legal pot and hookers probably help.)

This is a topic that has previously been talked to death. I won’t delve too deeply into it, but the similarly short short version of many parents’ rejection of The Holland Thing is that for many of us, perhaps even most, having a child with a disability isn’t just different. It brings its own element of chaos and uncertainty and pain. Our kids aren’t just different. They aren’t just neurodiverse. Our plane didn’t land someplace charming.

Our possible world contains some scary things indeed. Including the scariest, the one possible outcome that keeps us up late most of all. Of all the things that might befall our children, from developmental delay to social awkwardness to persistent non-verbalism to physical impairment, there’s that one that we fear the most, the one that involves burying our children. The Big Bad.

“Welcome to Somalia”, perhaps.

For some parents, the Big Bad lurks around the corner, very close indeed. For others like myself, it is a more remote possibility. For some, it is perhaps even inevitable. But for those of us who fight off the Big Bad, either as an active threat or just a possibility to scare the shit out of us every day forever, the idea of celebrating our child’s difference is… complicated.

Schuyler’s brain presents an enigmatic and wonderful landscape. Even as she moves more and more into our world and out of that internal kingdom where she spent so much of her childhood, she is still largely a mystery. I adore that mystery; exploring it with her is the singular joy of my life. But there’s danger there, too. Danger to her, which of course means danger to all who love her and whose lives would become unbearably empty and grey without her.

Recently, my Google alert for “polymicrogyria” sent me a link to a story that mentioned a boy who died as a result of his polymicrogyria at the age of thirteen. I confess, it shook me up. Most kids whose PMG proves to be fatal succumb at a very early age, usually from hard seizures. But here it was, a reminder that Schuyler’s own monster could very well be the Big Bad. Probably not, but if you’re a parent, you’ll understand just how very little comfort “probably not” can bring.

So we celebrate the child we have, and we do so without reservation, without an asterisk or a qualification. But we don’t let ourselves buy into a pretty lie, one which suggests that gentle words or peppy cheerleading or the niceness of a figurative Holland will protect our children if the Big Bad decides to visit.

And yet. We stand, and we love, and we fight when we can. I’ve written before that special needs parents take up rubber swords against the monsters if that’s all we have. And we do so not because we are brave or special or smart, but because what else are we going to do? Surrender? There’s another analogy I’ve heard, that having children is like letting our hearts hop out of our chests and walk around in this grand rough world, free and so very terrifyingly vulnerable. That one works for me.

Having children who are fragile in some way, it makes for a kind of middle place for parents. We are referred to as “typical” because our own brains and our own bodies haven’t betrayed us, but we don’t feel like we’re typical. Our lives diverge, drastically and irrevocably, from the typical, usually from the very beginning. When we see other parents at the mall, we don’t necessarily identify with them.

But I’m going to go out on a limb and suggest that because of our children’s fragility, and because of our at least nodding relationship with the Big Bad, as well as a host of Smaller Bads, we cherish our threatened children more deeply than typical parents. I don’t know what kind of father I would have been to a neurotypical Schuyler, but I am certain that I would have been a lesser one.

As parents of kids with possibly life-threatening disorders, we live with the threat of the Big Bad hovering over everything we do. But there’s a payoff, a Big Good that runs through our hearts and our relationships with our children like an unbreakable golden thread. I can’t describe it to you, not clearly. But that awareness of the preciousness of time, it’s a double-edged sword. It keeps us awake at night, sure. But it keeps us awake during our time with our children, too. If you thought the Big Bad might just have your kid’s number, you’d spend every possible moment sucking up all the happiness you could, even if you kept a rubber sword at your side the whole time. And in doing so, you’d find a concentration of satisfaction and a life well-lived that most parents can’t even begin to imagine.

Which isn’t such a bad thing at all, really.

Speaking of toughies, Marissa Howard-Karp has a very personal and honest post about her son and how she is willing (even though it’s really hard) to say her son is on the autism spectrum. She talks about the invisible nature of his challenges and much more. It’s really from the heart and I am really glad she wrote it.

Let’s meet some of our newest members to the site!

New Members
Please welcome Beth to the site. Her almost ten year old daughter was born with subcortical band heterotopia and polymicrogyria. Seizures are a part of life and they’re about to start working with new experts. You can check out Beth on her page here at Support for Special Needs and on her new blog, Kellybean, A Mom’s Dizzying Perspective.

Abby is also a new member of this site. She is the parent of two kids. One fights depression anb has been inpatient several times due to depression, PTSD and other chalenges.

There are a few other new members, so be sure to check out the “most recent” tab on the “members” section.

Group Updates
New member Bettina Flocks launched a brand new group called “Care and Love is Needed.” It’s a spot where people of any needs and abilities can meet and talk about the care be can given to children who are considered “special needs.”

If you haven’t joined the Anything Goes group, this is a great time. Members can talk about anything. One of those topics was shared by Julia Roberts. She asked the group to help her brainstorm on ways parents can support their kids and help them move past the social stigma that might come with the “special needs” category.

There are a number of other groups with ongoing conversations including Oregon and Autism Support.

You can start your own group any time. Check out how by clicking here. Have a great week everyone!

(By the way, the photo on the front page that goes to this article is a picture of my kids wearing Lucky Fin Bracelets. My friend from Lollipop Photography in Columbia, MO took it.)

“I’m going to go ahead and give him a diagnosis: Atypical PDD-NOS,” said the neuropsychologist. In plain English: my four-year-old was at the high-functioning end of the autism spectrum, and he’s a more social guy than is typical for kids with this diagnosis.

“I don’t know if the diagnosis will stick,” the doctor explained. “For now it fits, and when he comes back for another evaluation in 2 years, we’ll see where things are.” It was honest, but probably the wrong thing to say to mom who was raised by a family that competed in the Denial Olympics. I latched on. I told myself he was borderline, that the diagnosis definitely wouldn’t stick and so it didn’t matter. He was the same wonderful kid he’d always been, right? It was just a new description

Most of the time I can get away with it. He doesn’t have an IEP. He has Sensory Processing Disorder, but occupational therapy has helped. He struggles with focus, but his genetic history has prepared us for the possibility of an ADD/ADHD diagnosis down the road. He’s a charming, loving, social guy who makes friends easily, even if he does sometimes struggle with reading social cues.

But sometimes the diagnosis catches up to me.

A few weeks ago our family headed north for our synagogue’s annual winter weekend. We ski, tube, play games, and (because we’re Jews) eat an unbelievable amount of food. The kids run in a herd and there’s a lot of communal parenting that goes on during these weekends.

My kids ran around like gleeful maniacs from sunup until well past sundown. Months of occupational therapy have taught us that E. needs breaks even when he doesn’t think he does. The breaks calm his system down so he doesn’t get so overloaded he can’t control himself. There were no breaks that day, but we justified it by talking about how much time he’d had outdoors, which always calms him.

Around 9 I finally blew the whistle and took the children upstairs for bed. I got my daughter into her pajamas, but when I turned to do the same for E., he went off like a bottle rocket.  Screaming. Kicking. Threatening. Hitting me. Hitting himself and his sister. Slamming the door. Flailing. Inconsolable. Repeating, over and over: “I don’t want my pajamas!,” even after I told him I didn’t care what he wore to bed.

I could have been singing the score from Tommy and he wouldn’t have noticed. His brain was stuck in a loop. After 90 minutes, my wife came upstairs and worked her magic.  I was beside myself. These tantrums send me into the depths of parental self-doubt. Seeing my depression, she dispatched a friend, the parent of a 17-year-old with Asperger’s Syndrome.

My friend got it  – really got it – because she’d been there over and over for 17 years. And she was probably the only person who could have talked me off that particular ledge that night. Because her kid is on the spectrum. Like mine. Even this Queen of Denial heard my own brain say it that night.

Her kid is on the spectrum, just like mine.

These tantrums don’t happen in front of other people. Ever. And it feels like they’re impossible to describe. And his special needs are invisible most of the time to the untrained eye. So I don’t even try to explain. But in not trying, I’ve isolated myself. And I feel lonely and I complain about how no one gets it, no one understands. See how this works?

So here I am. Trying to accept that the diagnosis is real, owning up to it by telling YOU about it, so we can all get a little help and feel a little less lonely with this.

If you’re reading this, you probably understand, or you love someone who understands. And maybe you feel a little less lonely now too. It’s the best any of us can do.

So much time has passed since Schuyler began using Augmentative and Alternative Communication technology in 2005 that it’s almost as if she’s been using it all along. In my mind, there are two Schuylers, the ethereal one who existed very much in her own internal world before AAC, and the expressive, eager to participate Schuyler I know now, the one who works hard to be a part of the world and the society around her, and mostly succeeds. The Schuyler I describe in my book is not the Schuyler I know now, and I truly believe that AAC made the difference.

She began with the most basic of tools, a simple device with a handful of buttons that she could wear around her waist. It didn’t give her all that much in the way of new communication; she already knew and used sign language for all the basic statements enabled by this device. But the change for her was dramatic. She loved it, and she used it almost non-stop during the brief time she had it. It was a game changer for her, we could see that immediately. Schuyler was in love with having a voice, the one thing she’d been denied in her young life until then.

From that simple experiment, Schuyler became immersed in AAC. After a fight with her school district and a remarkable online fundraiser, we were able to give Schuyler an advanced dedicated speech device. In the years since (God, has it really been almost seven years? That can’t be right…), Schuyler has communicated using the Vantage, and later the Vantage Lite (hot pink, naturally), produced by the Prentke Romich Company. This device has done more than give her expressive language, although it has most certainly done that. Through its core language system, it helped to teach Schuyler and then reinforce for her the basics of how language works.

One of the things that I remember telling people about her device, the one she calls Pinkessa, is that it could very well serve her into adulthood, but the changing world, and our changing daughter, will probably have different plans. The love of words and language that Pinkessa instilled in Schuyler is driving her in new directions, and towards new technologies. Schuyler uses an iPad for a number of tasks, ones that excite her, things like learning sign language and seeing the night sky in new ways and combining the written word with visuals. She uses it to access the web and look up information for her homework, and to watch streaming movies when she’s stuck at my office with me. (And yeah, Angry Birds. Well, what are you going to do?)

And she uses it sometimes to speak, at the present time using an app called Proloquo2Go. Although she prefers the language system on Pinkessa, Schuyler gravitates towards the iPad. She seems to intuitively understand that the world is paradoxically bigger and at the same time more immediately available to her than either she or I ever understood before now. Schuyler also uses my old iPod Touch to text with friends and family now. She wants a phone, not to talk because she understands how limiting verbal speech is for her, but so she can text. When Schuyler communicates via text messages, she’s not the poor little disabled girl who can’t talk. She’s like you and me. She’s funny and she’s curious and there’s no impediment to her self-expression. (She has a particular love of the little Emoji characters; if you text with her for even a short time, she will inevitably send you a little farting monkey.)

Five years ago, I couldn’t have predicted how Schuyler would be nudging open the door to the world like she has just in the past year or so. That door has gently and quietly burst open for her, and I watch with fascination as she begins to find her own way in a larger universe. I like to imagine what her world might look like in another five years, although honestly, I know my imagination is far too small.

New Members
I’d like to welcome four new members! First, meet Christine. She’s the mom of two boys and her youngest was born with a left arm that stops below his elbow. She shared a link to a blog but it doesn’t seem to work. Keep an eye on her profile… she might be getting ready to launch a  new blog. You never know!

Jennifer is also new to the site. She has a blog that’s called A Walking Contradiction and is the mom to three kids. Her daughter, known as CB in most posts, was born with developmental delays. Check out her page here and give her blog a visit as she continues to document her family.

Two other new members to meet are Stacia who says she’s “a teacher and a Special Mom of a special young lady.” Be sure to welcome her. Also, meet Baby Jae’s Mommy who is an adoptive mom of a five-year-old who is dealing with Fetal Alcohol Syndrome along with other challenges. She is also a pediatric occupational therapist who “specializes in sensory integration therapy and autism.”

Support Group Updates
SFSN member Leslie Gail continues to rock the support for getting organized. Check out the awesome  GO (Get Organized) Month discussion she started.

New member Jennifer posted on the Cerebral Palsy and Hydrocephalus group. It would be really fantastic for members to pitch in and help with her discussion about the challenge of making friends.

There are new members in the IEP Discussion and Room for Rants groups. So if you’re a member, jump in and get some conversations going!

I hope everyone is having a fantastic holiday. Make sure to jump in and share. If you have any events that you think are work sharing with the community, be sure to check out how you can add events to the Support For Special Needs calendar!

Around the Special Needs Community

If you’re at all around any other social media outlets, no doubt you’ve heard about the Amelia Rivera case regarding a doctor’s rejection of her being able to get a kidney transplant. Community member Robert Rummel-Hudson wrote a great piece about the quality of life and the slippery slope. Please read and comment.

We’d also like to announce that Robert will be writing weekly – every Monday – on the site. We’re thrilled he’s joining us as a weekly contributor!

——–

Edited to add, by Julia:

I want to personally thank Jen for taking on the Around the Community posts. They take a lot of time and she does a fantastic job (often very late at night!) summing up the week and introducing us to new members. Go and welcome them as well. Please thank her in the comments and she’ll get the message right in her inbox!

Thank you for Build-A-Bear Workshop their giveaway this week. I be working with them on a regular basis and their support helps fund this privately funded site to keep it going! They will be starting a blog soon and when it’s live, I will let you know.

Many thanks for this community,

Julia

If it weren’t for the need to pay bills and eat, I’d spend no time working and more time hanging out with my children.

Back to reality.

If you work outside of the home, you know as well as I do how draining it can be. The average working person spends more time at work than at home. Yet, we still need to give that same time and attention to our children.

Well, not the same. No way can I give my family 40+ hours of my time a week. I’d die.

Instead spending the same amount of time, the goal is to spend quality time.

How I do It

Like I said in “How to Be a Cool Special Needs Mom,” I’m no expert. However, after being a mom for over 24 years and having 3 rug rats children, I have some tips to share.

The biggest thing I’d stress is for you to NOT discount small blocks of time. It’s easy to think that because you only have 15 minutes to spare, it’s not worth much.

In your children’s eyes, every minute of your time is worth its weight in gold.

Taking the time out to check in and see how your children are doing and what’s going on in their world is appreciated more than you know.

My CJ doesn’t do much verbal communicating. Yet, I always make it a point to ask how his day is and how school was. He just smiles but I know he understands. To him, mommy is around and paying him attention. That’s what’s important.

After working each day, a good practice to have is to take an hour before bed and spend it with your kids. It could be as small as watching one of their favorite TV shows to playing a game with them. Do that for an hour from Monday through Friday and you’ve spent 5 quality hours of time with your child.

Then, there are the weekends. I make it a point of doing little to no work on Saturdays. I spend the majority of my day with my child (the teenager is in her own world). Sometimes all we do is cuddle and play with his cars.

Planning Time

Even the busiest of workers gets vacation time. If you have vacation a couple of times of year, you can split the two between you and the family. Take one family vacation where you spend 5 or more uninterrupted days with your child(ren).

Spend the second vacation with your significant other. Going it alone is another option since “Me Time” is also very important.

It’s easy to neglect or take for granted spending time with your children when you are tired from working all day. Stealing back short moments and planning can help you spend plenty of quality time with your kids.

——

Michelle’s profile: http://supportforspecialneeds.com/members/reviyve/

On Twitter:  @SpecialMomSpace and her blog, Special Mom Space

Bakeshop Bears (my kids' personal favorites)

Attention! Megan (of Miles), GeekDad and CJ –  congrats to each of you winning a $25 gift card from Build-A-Bear Workshop!

When I was pregnant with my youngest, Quinnlin, I took her brother Gage to Build-A-Bear Workshop® to make his new sister a Welcome-to-the-Family present. That was over 10 years ago and we’ve been Build-A-Bear fans ever since. The kids have made a lot of animals over the years… and we’ve celebrated more than one birthday creating loveable friends.

When Build-A-Bear asked me if the kids might like to go and create a bear named Cookie, Cupcake and Donut or maybe a Kissing Puppy and Kitty, it took me about 1 second to say yes. I mean, perfect treat before Valentine’s Day, right?

Hearts for the insides...my son requested 2, put them to his forehead and sent good thoughts to Billy.

We had a great time over our Winter break at one of our local Build-A-Bear Workshops where Gage picked Sprinkle Donut (it was blue and a “boy” after all, now named Billy) and Quinnlin picked Confetti Cupcake Bear now named Sprinkles. Confused yet? While some might think my son is a bit old for Build-A-Bear Workshop but you won’t hear that come out of our mouths. Stuff animals have been a mainstay for the kids through their medical journey as comforting friends. “Billy” is nearby as he sleeps comfortably in a hammock made with the back of a chair and my son’s bed frame and “Sprinkles” is already a favorite friend.

While there Gage noticed a must have accessory – a guitar – high up on a display (he’s taking lessons) and before I knew it, he’d sent an employee in back who happily retrieved it for him and reloaded several on a shelf, all the while giving him kudos for helping make sure the store was in check! Their new friends wear simple clothes of jeans, Sprinkles with a “peace” shirt and Billy sports an orange hoodie.

Build-A-Bear is letting me give away THREE $25 dollar gift cards for a little one you love, to create a little one they love.

Leave a comment about a favorite stuff animal of your child or yours before January 20, 5pm EST and we’ll randomly pick three of you to win a $25 gift card so you can create a new friend! Enter to win now!

Success!

Announcing! I’m absolutely thrilled to tell you that I’ll be sharing Quinnlin’s story of navigating the world of special needs along with a special Build-A-Bear Workshop friend for the next several months on their new blog…which is coming soon! Of course, we’ll let you know when it’s live!

Disclosure: This post was sponsored by Build-A-Bear Workshop and because they’re terrific to work with 3 gift card winners will get to benefit from it, too!

Prices: Kisses For You Puppy and Kitty, 2 for $30 or $18 each. Bakeshop Bears, 2 for $35 or $20 each.

We may have a girl whose name begins with Q in our house who will love to learn that on January 20th (this week!) Build-A-Bear Workshop is releasing their new Victoria Justice bear!

Do you know what Bearville is? It’s Build-A-Bear Workshops’s online version of their friend  accessible by a code my kids both received on their bears. Yeah, they loved that too.

Also, because I think about my kids putting things in their mouths past age 3 (sensory seekers!), be sure to check and see which animals are noted as safe for 3 and under!