A couple of weeks ago, I got an email from a young blog follower named Rebecca. Rebecca is interested in pursuing a career working with individuals with special needs and she asked me this thought-provoking question: My question is which part of Josie's "support system" if you will, has the greatest impact on her?
First of all, can we take a moment to acknowledge how smart Rebecca is for considering her career options at such a young age?! When I was her age and my parents dropped me off at college and I was expected to declare a major, I had no clue what I wanted to do with my life, nor did I have any concept of what most professions entailed!
That savvy Rebecca takes it one step further and researches her options! Brilliant! It was such an impressive inquiry that I decided to turn it into a blog post. I tell you what, Rebecca, this was an overwhelming assignment but one that I'm very enthused to tackle. Josie, in addition to having Down syndrome, has had some significant health issues to face which has increased our interactions in the medical field more than some other parents of children with Down syndrome. For example, perhaps some parents have never had a meeting with a hospital social worker where as I have cried and begged and questioned several hospital social workers, thus, this component of our support system is significant. But I've tried to keep this list as concise as possible (For example, in addition to physical therapist, I don't also list physical therapist with access to a LiteGait, an orthotist, and an orthopedic physician, etc...) but if you have additional questions, you know where to find me.
Also, let me provide the caveat that I am only referencing my own experience enhanced by a brief Google search. This is not guaranteed to be comprehensive and it is subject to flaws. Should you have further knowledge/insight for Rebecca, please leave it in the comments section. On to the list:
Josie and the incredibly dedicated PT, Ms. Shannon
Physical Therapist (PT) - Focuses on gross motor (bigger) movements that use large muscles in the arms, legs, torso, and feet. A PT works on strength, range of motion, and endurance. Josie has been aided by a physical therapist in learning to sit up, crawl, pull up,walk, run, climb, jump, etc...
Josie and another one of her favorite PT's, Katie
Occupational Therapist (OT) - Fouses on fine motor (smaller) movements that use small muscles of the fingers, toes, wrists, lips, and tongue. An occupational therapist will teach basic tasks such as bathing, getting dressed, brushing teeth, toileting, and self-feeding. Right now, Josie's OT sessions generally focus on self-dressing and handwriting skills.
Josie and her beloved OT, Ms. Barb
Speech Therapist/Speech and Language Pathologist (SLP) - Focuses on expressive and receptive communication skills, articulation, fluency/stuttering, and feeding/swallowing issues. Currently, Josie's speech therapy sessions center around developing conversational speech and correcting her pronoun usage.
Developmental Teacher/Therapist - Consults with parents and professionals on global development which includes cognitive function, language acquisition, fine/gross motor skills, and behavior. A developmental teacher/therapist has an expert knowledge of age appropriate milestones and can provide guidance on overcoming challenges. Josie's developmental therapy sessions were play-based and her developmental teacher would offer suggestions for how I could help Josie achieve milestones through play. She also offered a lot of helpful advice about what tools to use (music/basic "old fashioned" toys like blocks and dolls) and what to avoid (TV/video games) to provide an enriching environment that was conducive to learning.
Special Education/Early Childhood Special Education (ECSE) Teacher - Is familiar with a wide range of special needs and educates children with various developmental disabilities. A SpEd teacher will adapt curriculum to each child's abilities and needs. In addition to academic goals, this teacher will work on behavioral and social goals as well. Develops IEP (Individualized Education Plan) with other professionals involved in a child's education (therapists, social workers, administrators, psychologists) to create goals catered to the child's individual needs. The SpEd teacher updates parents and coaches them on how to promote learning within the home.
My mother is a Special Education teacher and I grew up absolutely amazed by her extensive knowledge of various disabilities as well as customized educational approaches designed to help each student maximize his/her learning experience. It's not an easy career path but it's rewarding and it's never boring!
Case Manager - This is a broad term an the career specifics depend on the field/position but this person coordinates care. In a school setting, the case manager facilitates communication between all professionals involved in the student's care. Case managers schedule IEP meetings, maintain timelines, collect, analyze, and report data. Primary areas of focus for disability case management are facilitating communication between stakeholders, advocating on the disabled client's behalf, and assessing the client's needs. The case manager can then identity appropriate interventions that promote a maximum level of functioning for clients.
Case Managers have the potential to be very influential in a client's care. The best case managers are invested, proactive, and offer comprehensive and current information on the network of resources that are available to a client.
Aunt Leanne visiting baby Josie in the hospital
Hospital Social Worker - Provides patient-family support in a hospital setting. Coordinates physician and patient-family conferences. Offers crisis intervention; Refers patients to appropriate hospital and community resources. This one was important for us. You'd think since we adopted Josie, that we would have been familiar with the resources available to her. Boy were we naive! Because Josie spent so much time hospitalized between her cardiac condition and her chronic lung disease, the hospital social workers met with us and provided all sorts of information about medical specialists within the health system that could help Josie as well as offering information about state-specific programs available to help individuals with disabilities. Beyond that, they got busy behind the scenes setting up doctors appointments and enrolling Josie in these programs. The knowledge and assistance they offered was invaluable. They were also incredible at providing emotional support during some of the dark days in the hospital.
Developmental Pediatrician - A developmental disabilities specialist who can identity developmental needs and provide treatment to promote optimum development over time. This is a physician who combines information from multiple sources to provide comprehensive follow-up to address a child's complex needs. Josie has had the good fortune of being seen by two phenomenal developmental pediatricians who offer extensive knowledge on various developmental disabilities as well as the appropriate interventions to provide the best care for each child. While each child is unique, there are certain medical issues that are more likely to affect children with Down syndrome and it's the developmental pediatrician's job to identify and screen for these issues and recommend the appropriate course of treatment.
Behavioral Therapist - Applied Behavioral Analysis (ABA) is the application of behavioral principles to every day situations that will, over time, increase or decrease targeted behaviors. ABA has been used to help individuals acquire many different skills, such as language skills, self-help skills and play skills. In addition, these principles can help decrease maladaptive behaviors such as aggression, self-stimulatory behaviors, and self injury. (Source) This one might be a personal favorite because the impact this has had on our lives is HUGE and I cannot say enough positive things about it. We pursued behavioral therapy to get Josie off the g-tube when the SLP and OT guided SOS method did not work (read more about that HERE and HERE). But behavioral therapy can be used to increase positive and decrease negative behaviors in so many scenarios. We use the strategies we learned every day on all of our children and it makes life so much easier!
Aunt Leanne receiving her medal at the Special Olympics
Non-Profit Employee - This one occurred to me after I made the aforementioned list because I realized that the other professions listed seemed to either involved the medical field or the education field. But what if neither one is your calling? Then you do what I did and you get a business, social work, or public administration degree and you go to work for a public or non-profit agency that benefits individuals with special needs. Prior to becoming a stay-at-home-mom, I worked in financial development for several non-profits doing fundraising. If soliciting personal and corporate sponsorship, organizing committees and planning events or grant writing do not sound appealing, you can pursue work on the programmatic end of the field. This involves identifying needs and developing and implementing programs to address those needs. Some agencies to consider are Special Olympics, Easter Seals, and GiGi's Playhouse. This is just a small sampling from many, many other worthy agencies that benefit individuals with special needs. Rebecca, regarding which particular component of Josie's support system has been the most influential, that's impossible to answer. Its a tightly woven network of resources that work together to help Josie achieve her maximum potential. The best advice I can give is to review your options, research it further, and maybe even do some interviews or job-shadowing with some professionals and see what appeals to you the most. One thing is for sure: Josie and all other individuals with special needs are fortunate to have bright young people like you who are pursuing careers designed to help enhance their lives. Thank you!
We'd like to extend a sincere apology to our subscribers who received the following blog post via email, full of photos and completely void of narrative. Huh?! Yes, as with many of the blog posts, this one was done in piecemeal fashion utilizing the mirage of uninterrupted windows of time available to me throughout the day. And in true "Mom Brain" fashion, I accidentally hit "Publish" instead of "Save Draft" - a total amateur mistake. Please forgive me. Let's hope the following love story makes up for it...
If you're lucky, at some point in your life, you'll meet someone and it feels like the universe sent you on a trajectory into each others arms. The stars aligned, the angels sang, time moved in slow motion and the only explanation was destiny. In this moment, it feels as though you've found the other piece of your puzzle. Finally someone "gets" you. They "get" where you came from. They "get" where you are now. And they "get" where you're trying to go. And there's no fulfillment like linking arms and agreeing that "We'll get there together. I'm here for you!" And off you go - an unstoppable duo.
That's how it felt when I met my friend, Kristin.
I'll never forget our first "date" at Panera. We sat and talked for hours and I came home absolutely dumbfounded as I rambled on to Travis about all of the rather unusual life circumstances that we had in common: Little ones extremely close in age, Down syndrome, adoption, unusual fertility/birth circumstances, health challenges, parenting ideologies, neurotic Type A dispositions, extremely laid back husbands...we agreed it was "a God thing".
This bond became even more precious when our kids met (click here, Mom). Kristin and I immediately began arranging play dates whenever we could possibly squeeze in a spare moment in our hectic schedules.
We went to the splash pad, the lake, outdoor festivals and various parks. Kristin and I could talk for hours and our little ones would happily play for hours. Especially these two cuties:
They were inseparable, giggly little lovebirds. They became known as "The Future Monica and David" (If you don't understand the reference, you absolutely must CLICK HERE).
And just when we'd gotten attached to each other and just when our social lives became blissfully happy, Travis was offered another position and as we'd done many times before, we packed up and left. Leaving the Tundra was so much more difficult than I ever dreamed it would be in large part because Kristin's family had come to feel like an extension of our own.
But this is not your average long distance friendship. In just over a year since we left the Tundra, Kristin and I have seen each other on four different occasions. A couple of weeks ago, she proved how devoted and wonderful (and crazy) she truly is when she packed up her family of six and they took an EIGHT HOUR road trip to come visit us in our new home. Seriously, Folks - I think twice before taking my three kids to the Walgreens on the corner. She packed and hauled four kids and her incredible husband through 4 states! And it was such a joyful reunion!
You would think that having eleven people under one roof would be a little overwhelming but it was so natural and so much fun! We talked and we laughed and we danced and sang together (literally - there was lots of dancing and singing. Apparently Kristin's family exists in one big, live musical like ours does. I told you we were unbelievably compatible!). There were so many photo ops exploding with cuteness just because the kids were being themselves and absolutely loving each others company!
My culinary ineptitude was overlooked as adorable pajama-clad kids giggled between mouthfuls of breakfast cereal.
Even Kristin's beautiful teenage daughter, Madeline, happily passed on fun, teen-oriented activities to join us for the weekend and we're so glad she did because she is just awesome!
We went to the children's museum where the kids had a blast exploring.
Josie would have spent the rest of her life at the bubble station if given the choice.
Birk wooed Josie with his athleticism (as if she needed any more reasons to adore him).
We also did the all important fall outing to the pumpkin patch...
...where there were so many fun opportunities to capture adorable moments...
...and to preserve what would become cherished memories.
That's why I was crushed when later that day, I realized that I didn't have my camera. I made it home with all 3 of my children, my husband, our stroller, and diaper bag (all good news) but somehow, in the sea of people eagerly seeking to achieve their quota of fall fun, my camera was lost.
And it wasn't so much the value of the camera itself (although that made me sick)...
...Or the fact that it was super irresponsible of me (I'm really hard on myself about this in general)...
That camera held photos from the weekend that we spent with people we love so dearly; photos that would help preserve memories that will last a lifetime. Photos that will be displayed during the slide show at the wedding of these two soulmates:
I'm pleased to report that this story has a happy ending that will restore your faith in humanity: I called and my camera had been turned in. They were holding it safely for me. The world is still filled with kind and honest people.
On Sunday morning, we feasted on a delectable array of Krispy Kreme donuts (I'm telling you, no one in their right mind is going to drive across 4 states for my cooking) before it was time to bid farewell to our soulmate family. There was so much affection exchanged between these eleven people - all of whom share a genuine appreciation for the magnitude of the bond we share.
And while it was sad to part ways, we're not going to stress about it the slightest little bit because we know our future is filled with many more reunions, vacations, events, and memories to be made.
What happens when an insomniac swears off sleeping pills? You get a 4am blog post!
I got up, checked on my kids, laid back down, and my brain kept racing. After you're through reading this post, the source of my insomnia will be crystal clear: I am a type A, perfectionist, neurotic nutcase. All day long, my mind is swimming with ideas, ambitions, and goals. Yet there are not enough hours in the day...so it spills over into the wee hours of morning. It's truly the only time I can achieve solitude to focus. And when you're operating on 5 hours sleep, you can imagine how laser sharp this focus is (←Sarcasm). Allow me to walk you through it...
The first thing I did was google the Dolch Sight Word list and I found this website where you can print out free flash cards! Score (did you hear my excited squeal all the way over in Australia?!)! Josie loves flash cards. She will sit and drill herself on her picture flashcards (with the word on one side and the picture/word on the other).
The flash card discovery reminded me of an email I just received inquiring about this picture schedule seen in the previous blog post. At this point, it seemed sensible to turn this into a blog post. What else are you going to do at 4am, right?
Josie has been working on self-dressing but my goal for her is to shift this from an activity that requires verbal prompts from me, to something she can complete independently as soon as she gets out of bed in the morning.
I recently attended the National Down Syndrome Congress Convention and one concept that was drilled over and over in workshop after workshop is that kids with Down syndrome are visual learners. So anytime you can offer a visual aid, it is extremely helpful in facilitating the completion of a task.
So I got out the poster board (I recommend foam board instead), markers, sticky Velcro tabs, and laminated photos of Josie completing the steps of self dressing, and I made this:
The steps are numbered and when she completes each step, she takes the photo and puts it in the pink "All Done" box at the bottom and then she moves on to the next step.
On to physical therapy...Twice a week, we have college girls come out and reinforce Josie's therapy exercises with her to help her achieve her goals. They usually start with self dressing (see above) and then they move on to physical therapy. We have allocated a room in our basement to being what we affectionately call "Josie's physical therapy torture chamber". During Josie's sessions with the physical therapist, I take photos and draft a simple document like the one below with basic instructions on how to complete the exercises with Josie. The document is then printed and posted on the wall in the "torture chamber". This way, anyone can glance at it and guide Josie through her exercises, even if they were not present at the actual physical therapy session.
On to speech therapy...One of Josie's speech therapy goals is to learn proper pronoun usage. Josie frequently refers to herself as "you" instead of "I" (example: "You want a snack."). One strategy to help correct this is to play games that involves simple turn taking. This way Josie learns "My turn/Your turn". So I created a basic memory match game that Josie can play with her sister and work on "I got a match/You got a match". One thing that really helps kids with Down syndrome learn(and probably any kids for that matter), is to present the information in a framework that interests them. I could have created a memory match game where Josie is matching basic shapes or animals and she would probably enjoy that, but she really delights in flipping the cards over and seeing her family members' faces.
Claire, one of the beloved college students who works with Josie on her skills, brilliantly adapted this idea to create a handwriting activity that would appeal to Josie. She knows that Josie loves bread sticks from the Olive Garden, so she spelled Josie's name in bread sticks, printed out the document, put it in a plastic sleeve, and has Josie trace over it with dry erase crayons. It's a lot more fun for Josie to do handwriting activities when they involve her favorite food.
There you have it, Folks. Simple and affordable activities that any mom can put together to help her child acquire skills and achieve goals. Now that I've shared these ideas with you, you share your ideas for achieving a restful night's sleep with me (I'm not joking - how do I turn my brain off???).
I'm off to Starbucks for some liquid energy so I can return and face the troops when the rooster crows!
Greetings Blogosphere Friends! You were left hanging with that Aunt Leanne post but we have not forgotten. It's just that 4 out of 5 family members fell ill this past week in a scenario that was eerily similar to last winter (click HERE) so the Chief Blogger in the house has switched gears to being Chief Infirmary Operator. But before all this happened, photos from my birthday weekend were edited and uploaded so it would be doing an unforgivable disservice to these cute kiddos not to share their faces with the world...not to mention Aunt Leanne. The world needs more Aunt Leanne. Let's get to it:
The morning of my birthday, I was able to indulge in a few of my favorite things: showering and applying makeup in peace while Travis supervised the children, a little drive in the country, and opportunity to photograph my three favorite kiddos in their coordinated outfits among a backdrop of beautiful fall leaves. Lydia is at the age where sitting still is NOT an option.
However, I managed to get some sweet shots of the other two.
And often times, the unposed moments make the best photos.
As soon as we returned home from our little drive, we were greeted by Mama Hop and Aunt Leanne. Josie was flailing, desperate to be freed from her car seat, yelling "Aunt Leanne! Aunt Leanne!" I'm pretty sure my big sister gets that kind of reception everywhere she goes - and rightfully so! But she was as thrilled to be sharing her weekend with us as we were to have her.
Aunt Leanne got cozy in her infamous purple robe (really, there's no story here. Leanne just has an extraordinary attachment to this particular housecoat. The purple robe is to Leanne what the pink glasses are to Josie: a signature look, indeed). Then she got down to business spending quality time with her beloved nieces.
Mama Hop showed up with an agenda of her own: to help Merryn with her penmanship. Pinot Grigio in hand, she requested paper, a ruler, and a Sharpie, and she showed off her hidden talent of creating custom handwriting paper. Because that's what happens when your grandma is a retired teacher. And you guys wonder where "Tiger Mom" (yours truly) gets it.
Come on, Merryn. This WILL be covered on your SAT's. Focus!
...and more practice the next day...and the day after that...Merryn, how do you expect to pass your medical boards if you can't make a proper lowercase "d"?!
But it turns out that Merryn has even better penmanship skills than we realized because it was Merryn who did the lettering on my cake! Anyone who has ever attempted to write using a tube of icing can testify to the fact that this is no easy task! You go girl! Best cake ever!
A special (and rather funny) tradition is beginning with Mama Hop. We can it "Toast with Butter." You see, Mama Hop was the one who first introduced the girls to this fine delicacy and from then on, they were hooked! Now it has become an expectation. So in the morning, the girls filed downstairs and sat at the counter in anxious anticipation of a culinary creation so indulgent and rare, that they have to wait for a visit with Mama Hop to have it.
With a face like that, she should really star in a "Toast with Butter" commercial!
Did someone say they are hiring a "Toast with Butter" spokesperson? Move over, Lydia! Mmmmm...Delicious!
This photo tickled me because of the inadvertent descending slope by size. This is the only place Leanne will ever seem tall!
The morning of their departure, Leanne led Josie upstairs and helped her get dressed.
Never has there been a more doting an helpful auntie.
Thank you for the wonderful birthday celebration, Ladies. Come again soon!