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Avatar of Erin Breedlove

by Erin Breedlove

Appreciating Support by @erinrbreedlove

August 7, 2012 in Featured, Featured Member by Erin Breedlove

As adults, as parents, as caregivers, and as people who, for the most part, are independent, we understand the importance of showing gratitude for the things we’re given and the people in our lives.

Children, as dependent creatures often have difficulty understanding what appreciation means. Your children, as individuals impacted by disability, need to learn that a little appreciation and gratitude goes a long way. With that, enjoy a story of someone in my life who showed me, truly, that gratitude and appreciation only pay off in the end.

Like most children with disabilities, it wasn’t until about my sophomore year of high school that I began to realize that while there were laws governing how teachers and other support personnel were required to support me, it was often the things that people did just because they wanted to or saw that going above and beyond was the most adequate and efficient ways to do things. In high school, I had a wonderful support team inside the special education department, but outside, it took more work to help teachers understand that just because I had the letters I, E, and P attached to my name didn’t mean that I wasn’t capable or that they shouldn’t have treated me just like any other student. By graduation two years later, my high school was a model for inclusion, and for that, I’m extremely grateful.

When I began my college search as a junior in high school, I was told by several counselors and similar professionals that it was better to search college campuses by meeting with disability service centers and the people who work in them because if they couldn’t meet the needs that I had that were posed by my disability, there would be really no point in me attending the college.

On a dreary October day, I met the most wonderful support system, aside from my mother, I’ve ever had. (Because he doesn’t know I’m writing this, I won’t use his name.) Having personal experience as a parent of a child with a disability, I knew it was okay to tell him that I needed something, that something just wasn’t right, that something went wonderfully. After a rocky start to my college career through the first two years, my MillyDaddy (my term of endearment for him) saw me through it all. We went to church together,  and I had known a lot about his family, a lot about the ways that they were involved in the town. We truly were, and are, family.

In March of this year, I got the dreaded news that MillyDaddy had gotten another job at another state university. I was happy, as this meant that he was moving into the same town as his two children and grandchildren, but I was heartbroken at the same time. What would this mean for me? How would I walk past his office without the floods of tears that happened for the first few weeks after he had left? How do I explain my needs, very specifically, to someone else? The intuition that MillyDaddy and I felt was, and is, astounding.

Thank goodness for e-mail, text messaging, and cell phones. The last few months have been the hardest of my adult life to date. Last week, a friend and I made the trek to see MillyDaddy at his new job, where he was as happy as I’ve ever seen, and where, inevitably, he was the same MillyDaddy he’ll always be. Though I deeply wish he would come back to be with me daily again as he once was, I can be grateful and thankful for the lessons he taught me, not the least of which was the value of appreciation. Because of some things that have happened in my life, he’s truly a second dad, and I’ll always appreciate his support and his love.

—–

Erin can be found at Healthy, Unwealthy and Becoming Wise

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Avatar of Shelley Mannell

by Shelley Mannell

Round & Round the Garden…(for core strength)

March 15, 2012 in Ask the Physical Therapist, Community Wisdom, Featured by Shelley Mannell

This is a classic – professionals recommend that children who have poor core strength do wheelbarrows and planks as exercise but children can’t complete these activities unless they have good core strength.  I feel dizzy trying to sort my way out of this so I suggest we all hop off the merry-go-round and find out what the core muscles are and how they work.

1. Our inner core muscles turn on first.

We now know that the inner core consists of 4 muscles (the respiratory diaphragm, the pelvic floor, the transversus abdominis and the multifidus).  They function to give us a stable spine and pelvis before movement begins and they activate as a team in the same way before every movement that we do. During the process of development, the inner core muscles become active and efficient during the first 2 – 3 years of life. For our children with motor challenges, the inner core muscles do not become efficient due to neurological, sensory and alignment issues.  

2.  The timing of outer core muscles depends on the task.

Unlike the inner core muscles, outer core muscles activate differently depending on the task. Superficial abdominal muscles, hip and back muscles are all members of our outer core groups.  The inner core muscles create an anchor at the center so the outer core muscles have something to stabilize on and this allows the outer core to work efficiently.  We call this partnership of inner and outer core muscles the body’s “core strategy”.  When the inner core muscles are not active, children over-recruit outer core muscles instead and this causes clumsy/uncoordinated movements and can also lead to pain. (This happens with adults too.  Please go to www.juliewiebept.com for great information about core function in adults.)

3.  The inner core muscles are easily overwhelmed. 

The inner core muscles are easily overwhelmed by other muscles.  A sure sign that the inner core is not active is breath holding to accomplish a challenging movement.  Babies and toddlers do this naturally when accomplishing new skills but they move quickly through this as they develop. Children with motor challenges continue to use breath holding as their way of creating a stable center.

Now that we understand more about our core muscles, how do we apply it to help children with motor challenges?

1. Stop thinking about core exercise and start thinking about core strategy.

Core exercises (crunches, wheelbarrow, crab walk, planks, stability balls – the list is endless!) are something separate in a childs’ day but in reality core strategy is something that should be present throughout the day.  Building alignment builds core strategy, which is critical for endurance and strength. 

2.  A is for alignment.

Our children need to experience better alignment.  Many of our children tuck their bottom under (photo 1) and shift their rib cage back (photo 2) or pop their bellies out and shift their rib cage forward (photo 3) in an effort to keep their body balanced.  Alignment of the rib cage over a neutral pelvis is needed to be able to activate the inner core muscles (photo 4).  No amount of telling children to “sit up straight” will help; kids actually need to be able to breathe properly to activate the muscles and maintain the posture.   

 

3.  Everybody breathe.

When you are with a child, listen to their breathing.  If they are breath holding prior to/during a task, remind them to breathe. Many of our kids also overuse their shoulders or belly during breathing (when you ask a child to take a deep breath, do they lift their shoulders or puff out their belly?).  We need to retrain the respiratory diaphragm by encouraging a full breath with expansion of the lower rib cage; we call this an “umbrella breath”.  Then the inner core team can provide that all-important central stability.

4.  Movement should be fun.

Ultimately we want our kids to take their core with them wherever they go!  They need it sitting, walking, running, playing hopscotch, skipping rope, hula hooping, rock climbing and rollerblading.   If we train the inner core to come online first, then we can put that into play (and school and sports too!).   In that way, every activity becomes a core activity.  So in my practice you’ll find my clients working their core in everything they do – but the wheelbarrows stay in the garden and planks are just pieces of wood.

—– 

For more information on Dynamic Core for Kids or Physical Therapy for children with special needs, please visit Shelley’s website at www.heartspacept.com/blog.  For continuing education workshops, visit www.heartspacept.com/workshops.  You can also find Shelley on Twitter @heartspacept, Facebook at HeartSpacePT or Pinterest at heartspacept. 

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Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

Living in the Future

February 13, 2012 in Community Wisdom, Featured, Featured Member, Future Glimpse by Robert Rummel-Hudson

I can always seem to find something to feel anxious about where my daughter’s well-being is concerned, because I am a special needs father and a bit of a worrier, so it’s part of my dadly gig. But when I’m feeling especially “life handed us lemons so we’re going to make lemonade, not stick them in someone’s eye”, I think about how lucky Schuyler is to be making her way in an age of wonder when technology has given her so much help towards enjoying a richer and fuller life. She’s living in The Future.

Schuyler’s speech device hasn’t just given her a voice. It has modeled and mentored communication for her, teaching her through daily use the intricacies and structure of how language works. AAC tech has made a difference in her life, perhaps THE difference, and while not all or even most of the obstacles in her life at the moment can be solved through technology, the fact remains that the impact technology has had on her life is immeasurable.

So when I was approached by Support for Special Needs’s own Jen Lee Reeves over the summer and asked to join her and Kate Canterbury in a proposal to South by Southwest Interactive for a panel exploring the use of technology in the disability community, I was especially honored to be a part of the event. When SXSW accepted Jen’s proposal, I was thrilled.

Now, in preparation for the panel, Jen has put together a special video project to hear from other members of the disability community on how their own lives have been impacted by technology. Here’s her video explaining the project:

I hope that as many of you as possible can take a few moments to plop down in front of a camera and record a little somethin’ somethin’ to record your own special needs tech stories and share them on YouTube, in response to Jen’s video.

To help get you started, here’s what Schuyler and I put together. The video and sound isn’t awesome, but Schuyler is fun to watch. And if you’re a fan of Animal Planet’s Finding Bigfoot program, you’ll enjoy pointing at my beard, which is now thankfully extinct, and saying “It’s a Squatch!”

Finally, if you’re in Austin during SXSW, please come by the panel on March 12th from 12:30-1:30 in the Lone Star room of Austin’s Omni Downtown hotel. I think the discussion is going to be extremely informative and fun, and we all might learn something in spite of ourselves. SXSW has also asked me to autograph copies of Schuyler’s Monster after the panel, so if you’ve been wanting to tell me what a swell guy OR what a jerk I am, that’ll present the perfect opportunity. I’ll sign your book either way.

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Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

Simple Gifts

February 6, 2012 in Celebrations, Community Wisdom, Featured, Featured Member by Robert Rummel-Hudson

Sometimes it’s the small moments that catch our breath.

Over the weekend, Schuyler and I found ourselves wandering the mall aimlessly. We ended up at one of those little candy stores where you bag your own haul and they weigh it and charge you a stupid amount of money. If you want to enjoy the experience, you have to know and accept that going in; I won’t even share how much we paid for a bag of gummy worms, or how very little time it took us to eat them all.

At the front of the store, Schuyler gravitated to these little big-eyed stuffed animals that she loves. She picked out the ones she liked the most and asked if she could get one. I said we would see, because even though we both know better, it is nevertheless extremely important that I at least pretend that the answer might occasionally be “no”. We wandered to the back of the store to check out, well, larger versions of the big-eyed animals. (It really is impossible to win with these things in the store.)

As we stood there looking at the animals, I felt someone tap on my arm. I turned to see a young girl, maybe two or three years old than Schuyler. She shyly held out a big-eyed stuffed panda to Schuyler.

“I was standing outside the window and I saw her looking at this one,” she said, “so I bought it for her.”

Schuyler’s face fell into a huge smile as she took the panda. “Thank you!” she said, over and over.

“Wow,” I said. “That was incredibly nice of you. Thank you so much!”

“Did I hear you call her Schuyler?” she asked. “My name is Skye.”

We chatted for a few more moments, and then she was on her way with her little posse of teenaged girls, the kind of pack that I would normally, perhaps shamefully, expect to giggle and make snide comments about my daughter. These girls were just as fashion-conscious, just as chattery, just as teenaged-girly as anyone else at the mall. Maybe they weren’t so different from other neurotypical girls as I might imagine. It is entirely possible that for every mean girl out there, there’s a polar opposite. Perhaps there are more Skyes in the world than I have dared to hope.

I’m not sure what caught this girl’s eye about Schuyler, or what made her want to reach out like she did. Some might say it was pity, but I don’t know, it feels more complicated than that to me, and more positive. As parents of kids with disabilities, we grow accustomed by experience and by our own defensive impulses to steel ourselves against a world that we think mostly sees how our kids are broken. We forget that there is kindness in the world as well. Kindness, and the ability to see the qualities that shine vibrantly behind disability.

Curiosity doesn’t always accompany scorn. If we can just remember that and maybe drop our guard a little, just a very very little, we may find ourselves receiving unexpected gifts, and not the kind you can necessarily buy in a candy store.

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Avatar of Admin Dawn

by Admin Dawn

Essay & Webinar for Communication Technology

February 1, 2012 in Community Wisdom, Featured, Featured Member, From Julia by Admin Dawn

Essay & article from Elizabeth Aquino

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 14th.

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.

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Avatar of Michelle Howard

by Michelle Howard

Working Full Time & Spending Quality Time with Your Kids

January 19, 2012 in Featured, Featured Member by Michelle Howard

How to Work Full Time and Spend Quality Time with Your Kids

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

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Avatar of Lena Herrington

by Lena Herrington

The Journey to Residential Treatment: Part 2

January 18, 2012 in Community Wisdom, Featured, Featured Member by Lena Herrington

In a previous post, I wrote about our decision to place our son in residential treatment (RTC). The decision was one of the most difficult I can imagine having to make. Making the choice to send my little boy to a place with other children who have psychiatric and behavioral needs, a place where there are adults who may or may not treat him the way he deserves to be treated, a place where he is not their child and therefore, they will not be as invested in his well-being as we, his parents, are. What would he learn? What would he be exposed to? What behaviors would he pick up and bring home? I was, quite honestly, terrified.

When looking for a Residential Treatment Center, we had a lot to consider. First and foremost, we had to determine the funding. Since D had always been completely successful in the regular classroom, he did not have an IEP (individualized education plan for students with special needs). Without an IEP, the school system would not be willing to help us financially with this placement. We did not have open mental health or children’s protective services files, so both of those options were also eliminated. We certainly did not have the money to fund this type of treatment ourselves, nor were we in a position to take out a loan. We had private insurance, but due to D’s high level of needs we had to remove him from private insurance to place him on our state insurance for children. We were completely dependent on what the state health insurance for children would pay for.

With the state insurance paying, we were required to stay in state or in a facility within a limited number of miles from the state line. The facilities that we could consider had to accept the insurance and had to be approved by the insurance.

We also had to have the insurance approve D’s medical need for this level of care. In our state, there are several levels of care in the continuum. The other levels of care include therapeutic foster care and group homes at two separate levels of care. We chose to bypass those levels of care, against the wishes of the insurance company. Due to his need for more intense structure and therapy, medical management, and frankly, because he is adopted, we were adamant that he go directly to a locked RTC. We did not want him to misunderstand and think we were placing him with another family because we did not want him. We are his family and we wanted him to be secure in that.

We started with at least a dozen options, but narrowed down to only a few that could meet his needs. There are many different models of RTCs. These includes medical models that deal mainly with diagnosis and medication stabilization. There are also behavioral modification models, facilities that treat individuals with dual diagnosis (substance abuse and mental health or drug and alcohol abuse), relationship model that uses relationships between the patient and peers or staff members to modify behaviors, family models, religious based models, and others.

We immediately eliminated a facility that had a strong religious foundation. While we are Christians, we felt they used God  more as a punishment than teaching that He is a loving, compassionate God. We did not think it was fair to allow D to be subjected to yet another punishment from God. We felt he needed to know God in the way that our family does.

We were left with three facilities. One of those facilities we visited. The grounds were beautiful, the buildings were well maintained, and the program itself was remarkable. We could really see D doing well there. They helped students to learn to accept responsibility through their equestrian program, they had a psychiatrist on staff, they also had their own step down programs. Those programs provide a placement for students who no longer need the locked RTC, but still need the intense structure. Unfortunately, they denied D. They felt they were unable to meet his needs due to his sensory processing disorder (SPD) and autism spectrum disorder (ASD).

Another facility we visited looked great on their website and on paper, but was quite different when we toured. There was broken furniture on the recess patio and in the bedroom that I was shown. There were expletives written on the walls,  and overall, the facilities were dirty and not well kept. These raised red flags quickly. When I visited the classrooms, they had the students divided by states. The state that the facility was in had their students in one classroom participating in academics. The students from the state we lived in, on the other hand, were packed into a classroom with one adult and watching tv. They were very open about the fact that the students from our state were segregated for the purpose of academics because they did not know how to teach them. I walked away from the visit in tears, picked up my phone, and called our team leader to let her know we could not accept this facility.

Last but not least, we were told in the same phone call that a facility in the state north of where we lived had accepted D and we were welcome to come visit. Based on the website, we were not convinced, but we set the appointment and headed that direction. From the minute we walked in, I had a completely different feel. The staff was very well educated, the person we talked with was knowledgeable of the program and they were willing to answer any questions. From there, we went on our tour. The facilities were clean, the students were all working in the classroom. The staff member working with a student who was having a difficult time was soft spoken and working to help the student de-escalate.

This was the program for D! 

After reviewing many programs and visiting a few, I was relieved to know that D would be going to this facility. I was still terrified of the care he would truly get, the things he would learn, and the things he would be exposed to, but I was still relieved. We were moving forward with a plan.

I am including some resources that might be helpful when researching RTCs for your child.

Resources:

Federal Trade Commission: Questions to Ask - http://www.ftc.gov/bcp/edu/pubs/consumer/products/pro27.shtm

National Alliance on Mental Illness - http://www.nami.org/ (find your local NAMI office for resources available in your area)

National Association of Private Special Education Centers - http://www.napsec.org/

The Balanced Mind Foundation - http://www.thebalancedmind.org/ (offers online support groups for a variety of interests, including RTCs)

Additional resources can be found through your local mental health center, your child’s mental health team, and if your child receives special education services, you might also find assistance from the school district. There are many other resources available through internet searches.

——-

Editor’s note: I encourage you to get to know Lena through the site in the groups and through her blog and Twitter. She is an amazing advocate and a good friend…even to those she met on the Internet. Lena’s blog is http://luvmycrzylife.blogspot.com and twitter is @luvmycrzylife" href="http://www.twitter.com/luvmycrzylife" target="_blank">@luvmycrzylife

 

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Avatar of Chrisa Hickey

by Chrisa Hickey

Just A Belly Rub

January 9, 2012 in Featured by Chrisa Hickey

If you’ve ever read my personal blog, you may know that, along with three children, I have four dogs.  We didn’t plan on having four. It sort of happened by accident.  They are all dogs that someone else had mistreated or didn’t want, collected over the past decade from three different states and at separate times.  They are all different sizes, different breeds, different ages, and different temperaments.  Rosie, our oldest, was easy to train. Lola was difficult, but once she got it, she has been very obedient. Chloe is 70 pounds of big goofball, and Sydney, the youngest and the smallest, is stubborn as nails.  She reminds me a lot of Tim.  She likes affection, but only on her terms, when she is ready for it.  If you discipline her in a manner she feels is unfair, even if it’s not, she gets sneaky and destructive. She can spend days wanting to be near you, then just as many treating you as if you don’t exist.  Strange people and places give her amazing levels of anxiety. But above all of this, she is the cutest little bundle of hair you’ve ever seen, and, what’s worse, she knows it.

 

Sydney. Cute and she knows it.

Common wisdom says when you are choosing a puppy you should put it on its back.  If the puppy stays on its back and doesn’t fight to turn itself over onto its feet, it is more likely to be friendly and easy to train.  Sydney hated being on her back, even for a second.  She hates it to this day.  Every once in a while I try to cradle her in my arms on her back while rubbing her belly, and she fights and struggles relentlessly until I set her free.  She will allow no one to put her into this submissive position.  No one  – except Tim.

Tim has been in residential treatment for over two years.  But even so, Sydney can go weeks, sometimes months at a time without seeing him, and the minute he walks in to the house she runs to him.  She begs him to pick her up, and she flips right on to her back so he can rub her belly, lulling her to sleep.  And it’s not just her initial greeting.  Any time he wants, on demand, he can summon Sydney to his lap, flip her, and cradle her face up like an infant.  Over Christmas weekend he got her to voluntarily climb into his lap and she slept, on her back, in his arms, four times.  For a teenager that has a difficult time communicating with anyone, and a dog that chooses to rarely interact with anyone, they are amazingly attuned to each other.  Friends and family have commented on how amazing it is Tim can train her,  and what a kind and gentle soul he must have to have her trust.

Those comments make me realize that Tim’s difficulties communicating with peers and adults has as much to do with the peer/adult as it does with him.  He can convey comfort and affection to Sydney without saying a word.  She sees through his seemingly flat emotions – a symptom of the Schizophrenia – and hears the soft inflection in his voice as he calls her. She notices his upturned hands, making himself vulnerable to her, rather than dominating by snatching her off the floor.  He moves towards her slowly and when he cradles her, he makes her a nest, rather than forcing her into position.  Sydney sees the real Tim, not the constant-hoodie-wearing, unemotional, uncommunicative teenager with a mental illness that most people see.   When Tim eventually comes home from residential – or even if he moves to a supported housing situation after he turns 18 – I think Sydney may have to accompany him as his therapy dog.  Because from Sydney, he receives no-pressure, unconditional love.  And through Sydney, the world begins to see the real Tim.

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Avatar of Julia Roberts

by Julia Roberts

12 Ways 2012 Could Rock

January 4, 2012 in Featured, From Julia by Julia Roberts

Happy New Year!

Just for kicks! I’m listing ways my 2012 could rock. Join in! I mean, I already think my 2012 will rock, but a girl can dream, right?

1. Insurance would shamelessly approve each and every procedure, test and prescription our doctors ordered.

2. Our schools would make I.E.P.s painless…or E.I.E.P; Easily Implemented Education Plan

3. Each doctor, therapist, and counselor would return our calls immediately and cheerfully.

4. Each goal will be met and realistic goals set (without losing services that are helping) for our kids.

5. My kids won’t be bullied.

6. My kids will make new friends.

7. A grant will fall out of the sky to pay for co-pays.

8. We will win a weekly cleaning service.

9. We will win free gourmet dinner delivery once a week.

10. We get 8 hours a sleep per night.

11. We always have a camera (charged and turned on) to record the milestones.

12. We will have an abundance of leisure time to ourselves and time with the people we love.

What’s on your Ways 2012 Could Rock list?

 

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by Robert Rummel-Hudson

Of monsters and mousetraps: 2012

January 2, 2012 in Community Wisdom, Featured, Featured Member by Robert Rummel-Hudson

As holidays go, the new year can be complicated for special needs parents.

For one thing, the transition to a new calendar year represents a moment to look back, and that can obviously mean different things for different families.  We take the moment to measure our kids’ progress, or we realize once again that nothing much has changed. Some of us celebrate healthier kids, others look back on the new difficulties that have manifested themselves. Some parents look back on new babies and new challenges, others on unspeakable loss.

I suppose, however, that mostly the new year means thinking about the future. If that word, “future”, makes your stomach twist ever so slightly, or if in your head you spell it “The Future”, you may very well be a special needs parent.

For me, the past year was a mixed bag. On one hand Schuyler’s transition to middle school was much less stressful that we were afraid it might be. She’s got a team that believes in her and challenges her, and she’s found a place playing percussion in the band that gives her a sense of accomplishment and belonging.

But 2011 will be the year that we believe her complex partial seizures began in earnest. It was the year that her monster got a little bigger and her future a little more complicated.

For parents of special needs kids, The Future is a little like a giant mousetrap, with a big hunk of hope where the cheese would go. And we go for that cheese, because we need it. We can’t go forward without it, but unlike a mouse, we are entirely aware of the trap; we know exactly how terrifying The Future can be.  It can be its own kind of monster, and if we let it, it can sink our present.

So if I were to extend a new year’s wish to my fellow parents as we make our way through this world that is very much not Holland, it would be not just for good things for our kids, but also for the light to see those good things ahead of us. I would wish for the fear to diminish and for the hope to manifest into real positive development.  And next January, when you look back on 2012 in the rear-view mirror, I hope that you’ll remember a year that was filled with the very best things for your child and your family.

May 2012 be a launchpad for our kids; may it bring them victories and successes and happiness most of all. And may it bring peace to their families, particularly to the parents who love them without limit or hesitation. If The Future must be a monster, let it be a Cookie Monster.

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