Andrew, Gabby and Heather
Is it any wonder that they share the same month?
This year, Andy asked why is it that I get so emotional on Gabby’s birthday. I don’t have this same overpowering weepiness on Lucy or Evey’s.
It’s hard to put into words.
12 years later I can still remember everything about that day. The dimness of the labor room. How scared and tired I was. Finally being moved to delivery. How very hungry I was. And when the doctor told me I could start pushing – after 39 hours of labor I could not wait to met my baby.
The room immediately filled up with doctors. There were some other complications with the birth and I was eagerly waiting for someone to yet “It’s a……” Finally someone said “girl”. I could not believe I had a daughter. And then I held her. I never experienced a love like that.
And after awhile, the doctor, Gabby’s dad and his uncle all gathered around the bed to tell me she had Down syndrome. I cried and cried. I asked, “ How do you know?” And the doctor said, “I can tell just by looking at her.” And I said words that will forever haunt me, “But she’s so beautiful.” As if babies with Down syndrome were not beautiful. And then he told us we had options – we could put her in an institution. And I was immediately snapped out of my sadness. Did he really just say that? I don’t remember what happened next, it was a blur – I was so emotionally and physically exhausted.
After a bit, we had a visit by Melinda and Cindy, life long friends of mine. Melinda was the only other person I knew who had a child with a disability – and I remember her looking at me and saying, “You can do this.”
I remember asking if we still wanted to name her Gabriella. As if somehow she wasn’t good enough for that name now. I didn’t understand any of my feelings. When I looked at her, I just thought, “Oh my, she is such a Gabby Girl”
The nurse swaddled Gabby up and said she was taking her to the nursery for a bottle. I explained that I had every intention of breastfeeding. I don’t even think we had bottles at home. The nurse just smiled and said, “Oh honey, these babies don’t breastfeed.” I don’t remember what came next, but the next thing I knew I had that baby in my arms, cuddled up to me, trying to nurse. And it was then that it dawned on me, that for the rest of Gabby’s life, people would tell us what she couldn’t do and it would be up to us to prove them wrong.
Once we left that hospital, I never looked back. Taking her home provided such healing. Our days were filled with normal baby stuff – we did have extra complications with nursing, but after 3 ½ months, we figured it out and she nursed until I became pregnant with Lucy. Gabby was my best friend – I loved spending every single minute with her. I slept with her cuddled up in my arms next to me. We took the dog on long walks and spent time with friends and family.
Since starting DSIA in 2004, it has become my passion that people see people for who they are – not what they can offer or give you, not for what they might become or do with their lives. I often say that having a child with a disability is so freeing. It taught me to love unconditionally, in the purest form.
What I would love people to know is that people with any sort of disabilities are just like you and I. They love, they feel, they learn, and they teach. Sometimes they do things at a different pace or a different way, but they try just as hard, if not harder than someone who does not have a disability.
My hope, in the coming year, with DSIA’s Medical Outreach Program that we can change the way doctors give a diagnosis. That it is not riddled with misinformation and fear. That professionals are educated about what living with Down syndrome is truly like – and there is support and love out there to help you in this journey.
To this day I am haunted by my sadness on October 30, 2001. I feel like I betrayed my daughter by feeling so sad over who she was. In truth, she is perfect. Blissfully perfect.
“Had I any inkling of what (her) life would be like when she was born, I wouldn’t have shed a single tear.” Ellen Jennings
originally posted by Heather Green, from her family blog, Butterflies and Bellybuttons
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Monica & John Michael
I promised to blog more consistently, and, well, somehow a school year has passed!
It’s been a whirlwind year of firsts for John Michael… most importantly, he has successfully completed a year of fully included Kindergarten in our kids’ Catholic School and is the first student with Down syndrome at the school. On the day of his Kindergarten promotion, I literally felt like I could exhale for the first time in months. All the emotions… the awesome moments and the kick-in-your-gut raw days instantly behind us and I had a good little cry sigh of relief!
The year started off with John Michael un-aided and we took a “let’s see how this works” approach. It became clear within the first week or two that an aide would be necessary to help him stay on task, give individualized attention to understand how to do a worksheet, to help with initiating play on the playground, playing appropriately, give extra time when writing or doing math or at learning centers which required more patience and time to complete a task, etc…
My head spun as I now had to hire someone to help John Michael succeed. In a private school, the family typically provides the aide since we opted out of the public school system. We felt strongly that John Michael should attend the same school as all his siblings and to grow up in a nurturing Catholic environment where faith was interwoven in every aspect of school day. I advertised on Craigslist and Care.com, looking for a qualified person with a great personality. After a few mis-fits and a few weeks of frustration and prayer, we found Sara… John Michael bonded with her immediately at the park where we met her and we could tell within 30 minutes that she would be a great fit. She is a breath of fresh air, patient, kind, compassionate, caring, positive and coachable… willing to do what it takes to help our little man succeed. It’s been a win-win, because the principal, teachers and the kids in the class love her.
There are so many aspects of his school year I could write on, and I could spin it to be ultra-positive, but I’ll opt for real…so pardon the free flow writing… I also hope this isn’t so long that I lose you!! Please leave a comment to let me know you’re there! A little positive reinforcement will help keep me writing LOL.
STRENGTHS: While all kids with Down syndrome develop uniquely and have different strengths and challenges, John Michael’s strengths are his verbal skills and physical strength. At the start of the year, he had a hard time with fine motor skills, such as scissor cutting and using enough pressure to write his name with a pencil. He gets weekly Occupational Therapy to help strengthen his core and work on fine motor. He’s done a fantastic job this year and can cut rectangles, circles and triangles fairly well. Organic shapes, where a lot of turning is required, is a bit harder and he’s working on that. He seems to enjoy Math (often a struggle for kids with Ds, but maybe he inherited my Math gene :-)). Now, he can cut out equations, match correct simple addition or subtraction answers to a picture, glue and color on his worksheet all independently. As for writing, what a difference a year makes! You can see by this “before and after” example how his name writing has developed… He started the year by writing JOHN in all caps. By year’s end, he writes JOHN MICHAEL with upper and lower mixed all on his own!! He can write all of his uppercase letters independently, including most lowercase as well. His number writing is also improving tremendously, with 2’s and 5’s being the hardest to write legibly, but they are coming along great.
John Michael’s speech is very good and he is mostly understood by his peers and teachers. Sometimes he speaks too quickly, but he is also very willing to slow down, try again and correct his pronunciation, so I added “articulation” as a goal to his Speech Therapy goals. With his personality, confidence and ability to perform, I can see him being a self-advocate speaker or a musician/actor some day and articulation will be key for him to be understood. I’m so proud of him!! Musically speaking, he is also great at matching my pitch and has a range of about one octave. 🙂
CHALLENGES: Our biggest challenge this year has been his behavior and is a huge reason why a one to one aide is necessary for him. He’s a bright, engaged kid who loves to learn, which includes picking up language and “bad words” heard from other kids. In our home, the “S” word (stupid) isn’t allowed… yet John Michael developed a habit of calling people stupid… adults, students, teachers, parents… anyone’s fair game. He tells me a boy in his class calls him stupid. I pray that’s not the case… Then in true Kindergarten “age-appropriate-yet-annoying” behavior, he uses lots of “potty words”… ad nauseum!!! Girls tend to ignore him, but boys will laugh and encourage him, so it continues… Problem is that his little brother, Luke, who just turned 4, hears it, laughs, mimics him or tattles on him, which re-enforces the behavior… He has also had trouble this year with pushing kids or kicking them if they were within reach… blowing raspberries, which are very wet, and he would get in trouble for spitting… I keep reminding myself… “This too shall pass”, and then something new will pop up and challenge us.
SOCIAL: John Michael has a few friends in the class, mostly girls and a couple boys who will play with him at recess. He is also very comfortable playing by himself. He is well-known and liked by most of the student body which goes from Transitional Kindergarten through 8th Grade. It’s heart-warming to see him comfortably approaching 7th and 8th Grade boys to play basketball! When passing kids in the hall, he gets high 5’s or hugs from kids, too. After school, at pickup, I often find him chatting in a group with big kids. They love him, but I would like to see him developing bonds with peers of his own age. That has been a bit challenging, and while he has been invited to some birthday parties, he has not been asked for playdates. Having a large family has its bonuses in terms of never running out of playmates, but it makes it more difficult to plan playdates as well… I also wonder if parents are a little nervous to ask. I’m praying that his behavior will continue to improve and kids will want to spend time with him and include him in their social activities. He often talks of wanting a “sleepover”, but I’m so not ready for that yet… 🙂
COMING UP… Next school year will bring many exciting things. When I try to imagine 1st Grade, I sometimes start to feel that ache in my heart and pressure in my head… Fear of the unknown… I have so many questions… What will 1st Grade be like? Will the teacher embrace him the way his Kindergarten teacher and aide did? Will she be patient with him and willing to modify his work and accommodate a different learning style or mode? Will she be open to alternate methods, like using the iPad? Will I have to hold her hand through this brave new world as we navigate the next year together? I’m pleased to say that his one to one aide, Sara, will stay with him next year! I’m also grateful to the dozen or so Catholic moms from all over the country that I met this past year who are blazing the trail with me or have already been on the path for a few years and encourage me and fuel my passion for full inclusion. I absolutely LOVE the flexibility we have with our Private School Plan, and do my best to block out the question “Is the grass really greener on the other side?” (meaning the public school option)
We have had so many amazing moments this past year… the Thanksgiving Feast, his participation in the Christmas Pageant, his writing and math skills (reading remains a challenge, but we’ve seen much improvement), the Jogathon, Kindergarten Promotion Mass (with a huge smile, he brought up the Gifts with 2 classmates), and many more great moments. Parents who thanked me for having JM at our school… A principal who approached us when JM was 12 months old and invited us to consider enrolling JM when he was old enough to attend… His wonderful teacher and aide, who reminded me all year how amazed they were at how well he was doing and that he continually surprised them with his abilities… So many blessings, too many to count! JM is a very sweet boy, compassionate and often the first one to be concerned when a student is hurt. He loves to sing, dance, learn Spanish, play basketball, and just be one of the kids. I don’t think he sees himself as different from his peers and I think most of his peers see him just as John Michael… as one of their own. I will keep praying for those relationships to develop as the kids grow and mature. And will pray for an amazing year in 1st Grade!!
If human beings are perceived as potentials rather than problems, as possessing strengths instead of weaknesses, as unlimited rather that dull and unresponsive, then they thrive and grow to their capabilities –Robert Conklin
CLICK HERE to read the full article that talks about Starting with Strengths when talking about disabilities. To learn more about the author, Kathie Snow, http://www.disabilityisnatural.com/
This is a guest post by the website Social Security Disability Help. All of the resources on their website are free, including a legal consultation.
Understanding Disability Benefits for Children with Down Syndrome
Individuals who have Down syndrome can grow up to lead happy and productive lives. However, achieving independence often requires hard work and assistance. This level of support can put significant strain on a family’s finances.
If your child has Down syndrome and your family is struggling financially, you may be eligible to receive Supplemental Security Income (SSI) benefits on his or her behalf. These benefits can be used to meet your child’s day-to-day needs and can help offset the expenses associated with his or her condition.
It is important to understand that the application process for SSI benefits can be long and complicated. The requirements are very strict and applicants are screened thoroughly. Even the smallest mistakes or inconsistencies can cause your claim to be delayed or even denied. For this reason, it is in your best interest to research the SSI program and gain a deeper understanding of the application process.
This article will serve as an introduction to the SSI program.
The Social Security Administration (SSA) operates two disability benefit programs—SSI and Social Security Disability Insurance (SSDI). They are not the same and are run very differently. Children will only qualify for SSI under their own record because eligibility for SSDI is based on employment history and tax payments.
SSI is a needs based program that distributes benefits to disabled individuals of all ages who earn very little income and who have few financial resources. Eligibility for SSI is based solely on an applicant’s financial standing. Because children don’t often earn income or support themselves, the SSA will assume that a parent or responsible adult contributes income to support the child. For this reason, the SSA will use the child’s household income to determine whether or not they qualify. This is called deeming.
The amount of income that will be deemed is based on the number of children in the household, the number of parents in the household and whether all income is earned or unearned. Learn more about SSI, here: http://www.socialsecurity.gov/ssi/text-child-ussi.htm
In addition to the above-mentioned financial criteria, all applicants must also meet certain medical requirements. These can be found in the SSA’s official manual of disabling conditions—commonly referred to as the Blue Book. The Blue Book is broken into sections, each of which lists different medical criteria for certain disorders. The listing for Down syndrome can be found in Blue Book section 110.06—Non-Mosaic Down Syndrome.
Based on this listing, your child must supply the following medical evidence:
- A laboratory report of your child’s karyotype analysis signed by a physician or the karyotype analysis not signed by a physician but accompanied by a note signed by a physician stating your child has Down syndrome; or
- A physician’s report stating that your child has chromosome 21 trisomy or translocation as demonstrated by a karyotype analysis and distinctive facial or other physical characteristics of Down syndrome; or
- A physician’s report stating that your child has Down syndrome characterized by the distinctive physical features of the condition as well as evidence proving that the child functions at a level consistent with those who have Non-Mosaic Down syndrome.
If your child has been diagnosed with Mosaic Down syndrome, he or she will not be evaluated under this listing. Instead, your child will have to qualify under a listing associated with his or her affected body system(s).
Beginning the Application
An important part of the application process is the application preparation. Your preparation should include the collection of all necessary records and documents. Non-medical records should include financial records, your child’s birth certificate, your child’s IEP or IFSP plan, the Social Security numbers for all household members, and contact information for your child’s schools, teachers, therapists, doctors, and caretakers.
Medical information should include the documentation listed in the Blue Book requirements as well as a history of your child’s diagnoses, treatments, clinical findings, laboratory findings, and a statement from your child’s treating physician that attests to his or her limitations.
The actual application is made up of two forms and an interview. Once you are ready to begin the application process, you should call the SSA immediately to schedule your child’s interview. This is due to the fact that it can take months before the next appointment becomes available. While you wait, you should continue to collect the required information. If you cannot locate certain required documentation you should still go to your scheduled appointment. The SSA will work with you to procure the necessary information. Although one of the two application forms can be completed online, many parents prefer to complete both at the time of the scheduled interview.
Receiving a Decision
Following your child’s interview you will receive a written response from the SSA stating their decision within the next five months.
If your child’s initial application is unsuccessful, it is important that you do not panic or give up. You can appeal this decision within 60 days from the date you received your notice of denial. At this time you can provide additional evidence and documentation to build a stronger case.
Although the appeals process may seem overwhelming, it is often a necessary step toward receiving financial support. In fact, statistics have shown that more individuals are approved during the appeals process than during the initial application. Remain organized and persistent and your child is likely to receive the benefits that he or she needs.
For information regarding the adult application for disability benefits or about the application process for someone with Down syndrome, visit the following page: http://www.disability-benefits-help.org/disabling-conditions/down-syndrome-and-social-security-disability.
Well as 2013 comes to a close I have 3 things to look back on this year that I will keep close in my heart and then when I need to feel inspired I will just think back on those moments. Each moment will help me through various journeys I will go on this year. Many of these journeys I have taken in the past but each time they change – sometimes big changes and sometime little ones but each time the outcomes are different. I like to think that the changes are for the better that the information that we as a community of families and friends of people with Down syndrome promote helps with that acceptance. As I walk into our next IEP for our daughter I plan on keeping Luke Barnes’ speech that he presented at the Step Up for Down Syndrome Walk in my head. When he talked about going to College, traveling and how his parents were told things that he would never do they didn’t listen, or if they did they took it as a challenge. When he chanted “Yes I can” I will change that chant to “Yes she can”. When we are told by professionals that she can’t do something I think the first response out of my mouth will be “Yes she can”. If they give me the same excuses they have given families in the past – that people with Down syndrome can’t do something then I think my response will be “I guess you haven’t meet my daughter because not only can she do it, she will do it.” She may do it in a different way and it may take her a little longer but then again isn’t that what differentiated instruction is all about.
The next 2 events are the proud mom moments. The past few months our Friday nights fun has been attending our son’s High School football games for Whitney High School. Our daughter loves going and cheering on her brother making sure everyone who sits around us know that her brother is number 81 and that he is the kicker. She then will tell them that he also plays soccer for the school. She is his #1 fan the president of his fan club – he can do no wrong in her eyes and she is not afraid to let people know. But what is so funny about their relationship is that no matter how much he complains about the attention she attracts he always looks into the stand to find her and give her a thumbs up when she calls down to him. When MacKenzie arrives at the games she always lets the cheerleaders know she is there that her bother is #81 and his name is Alex – this is her routine. She shows them her dance and cheer moves and asking to get her picture with them. She greets the cheer squad with high 5’s, hugs, handshakes and an infectious smile.
Several weeks ago as we were sitting in the stands watching the game the Varsity cheer squad began chanting “MacKenzie, MacKenzie” a couple of the cheer leaders approached us in the stands and handed MacKenzie a cheer bag containing a cheer T-shirt, foam finger a other cheer necessities. They asked if she’d like to come down and hang with them until the end of the game. The smile on MacKenzie’s face was huge and I was so proud of her there, with the cheerleaders. She greeted them with giggles and that infectious smile that only our children have. They realized that it is the simple things in life that count.
Fast-forward a few weeks. This past week another group of young ladies again paid our daughter a compliment. On this Friday night, the Junior Varsity Cheer leaders – during their last home game – recognized MacKenzie for her enthusiasm and dedication to her brother. These girls had really gone out of their way to make something that MacKenzie would want and use. They presented MacKenzie with a shirt with WHS Cheer on the front and on the back they put on her brother’s football number, 81, a number she tells everyone at the games and our last name. She thanked them the best way she knew how – showing them them her cheer routine and ended it with hugs for all the girls. As we took a group picture MacKenzie stood in the center beaming a gigantic smile. We returned to our seat and began looking at the other things in the bag and found that some of the girls had written her notes thanking her for coming to the games and helping them cheer. MacKenzie sat and read the notes from the girls and was just as excited to get a note addressed to her, as she was to get the shirt they had made.
As I watched my daughter beam with pride for being recognized, I realized that we so often take the little things for granted as we often are pushing for acceptance. Sometimes we need to accept that little steps for us, are big steps for others whom this is something new to. We can talk about acceptance and all the great things people with Down syndrome are doing but until you actually have the opportunity to meet someone and be touched but him or her you will probably never know. And as scary as it can be, we as parents need to sometimes take a step back and allow our kids to advocate for themselves and we need to be there for support but they are the ones who will teach others that they are more alike then different.
Thank you all who supported, walked and came out to celebrate Down syndrome!
What a BRIGHT, SUNNY AND FUN DAY for the Step Up for Down Syndrome Walk – DSIA’s 9th Annual Walk.
The Walk had it all – old friends, new friends, great exhibitors, fabulous volunteers, wonderful entertainment, fantastic food, and……the Walk raised $30,000 that will enable DSIA to continue to provide resources and support within the greater Sacramento area!
Because of the generosity of family, friends, and co-workers, this is just an example of the types of programs that will benefit from your fundraising:
- Parent-to-Parent Program
- Educational speakers – Dr. Brian Skotko, Sarah Rosenfeld Johnson and Dr. Dennis McGuire
- Social events
- Medical Outreach Program
Congratulations to all the teams and individuals for their donations and participation. Special congratulations to the following teams:
Dante’s Spunky Amigos – Most Money Raised – $2638.00
John Michael’s Super Heros – Most Team Spirit
BIG HUGE Thanks to CCPOA (California Correctional Peace Officers Association) for donating AND BBQing the lunch! It is appreciated more than you know!
To our volunteers – you are the best! Thank you for coming out with a generous heart and big smiles!
Special thank you to Vanessa Acevedo – she set up a bake sale and raised $400 for her team – Eben’s Explorers
And a GIGANTIC thank you to the Sisterhood – a local group of moms – who put together this GORGEOUS calendar and donated all the proceeds of the sales to DSIA! OVER $7000.00!!!
Didn’t get one? You still can – CLICK HERE
And, speaking of Donations, donations to the DSIA Step Up Walk can still be made until December 31, 2013!
DSIA was honored to have Luke Barnes, a Self Advocate, Sac State Student and Humanitarian motivate us with his speech! He was AWESOME!
Thank you to the following for great entertainment:
- Music to Grow On
- Dusty’s Puppets
- Group Resplandor
- NOW 100.5
A special thank you to the following vendors who participated at the event:
- Alta California Regional Center
- California Mentor
- Carly Litvik Music Therapy
- Jane Johnson Speech Services
- Music To Grow On
- Neurocognitive Development Lab
- Pathways to Recreation, INC
- Reece’s Rainbow
- Sac City Unified School District Community Advisory Committee
- UCD MIND Institute
- WarmLine Family Resource Center
- Project Ride
- Origami Owl
- Corner Bikes
- Bright Children International
- Camp Recreation
- Dusty’s Puppets
- Pacific Dental Services
- the Sisterhood
And an extra special thank you to our sponsors:
Want to share your amazing pictures from the walk, and perhaps see them featured on DSIA’s website and future walk materials? Send your high-resolution pictures to email@example.com and we’ll send you an image release. You just might see your pictures featured by DSIA!
Lastly, please take a few moments to help us make the walk event bigger and better!! Please answer a few short questions! CLICK HERE to take the survey.
Thank you and we will see you in 2014!
Just a brother with two sisters: truth.
Guest blogger: Beth Foraker
“The great enemy of the truth is very often not the lie, deliberate, contrived or dishonest, but the myth, persistent, persuasive and unrealistic.”
— John F. Kennedy
Tell me the truth…
stop and really consider it.
How do you feel about Down syndrome?
Does it gross you out?
Make you uncomfortable?
Time for a little truth telling.
I’m gonna keep it real and hope you last until the end.
Do you dare?
Down Syndrome is not frightening.
It’s not the problem.
It most certainly does not warrant the death penalty or loss of life in utero.
The problem is the pervasive and concrete-like myths that persist.
Time for a little jack-hammering.
Myth #1: “They are so happy.”
Ummm….not so much. Patrick has the full deli counter assortment of emotions: anger, loneliness, joy, confusion, sadness, happiness, calm serenity, extreme excitement, embarrassment, love.
Yes, what ticks him off is not what ticks you off…but isn’t that true of your other friends and family?
He does not sit around in a perpetual dumb happiness every day — in fact, that whole idea is just plain silly.
Myth #2: “They are stubborn.”
People with Down syndrome are under a microscope.
Like it or not, they are held to higher standards behavior-wise than the typical population.
Imagine a line full of kids.
Imagine all of them pushing, poking, and acting unruly.
Who gets nailed almost every time??
Yep, the kid with Ds.
He (or she) is easy to spot…I get it…but it’s a bummer.
Being “stubborn” could also be called being persistent, having perseverance, demonstrating grit (the hip word in parenting if you haven’t gotten the memo)…but almost always, in reference to children with Down syndrome it is labeled “being stubborn”.
I don’t buy it.
Myth #3: “Children with Down Syndrome are a burden.”
Honestly, this is the one that really prevents children with DS from living a full life.
Children (Down Syndrome or not) are NOT a burden.
Every single child on our big blue marble is a remarkable, stunning, one-of-a-kind gift to all of us.
They are gems…rare and beautiful.
How is that burdensome??
Is there more work involved with a child with Down syndrome??
Does that make it not worthwhile??
Don’t you have to dig deep (and hard) for diamonds??
Aren’t our kids more precious than diamonds??
If I could crush this myth into diamond dust I would…because this is the vortex of all prejudice.
If people consider you a burden, then you don’t get equal access.
Heck, you don’t really deserve to live.
If you are trouble, people avoid hanging out with you.
If you are difficult, well then, it’s easy to leave you out, exclude you and close doors of opportunity.
Today, this very day, I spoke to two different moms about their children with Down syndrome and their education. Both of them are fighting for the chance to have their child fully included in the typical classroom. One is in second grade, the other in fifth. One lives in Florida, the other in California.
Honest, gut-level truth right now: their child is not the only struggling student in their class.
Their child could very well be a better reader and yes, a better student, than another child in that class.
Their child is the one singled out.
The one that needs to prove their worthiness to even get access to the regular room.
Because of the pervasive prejudice that continues to this very day.
Here’s my truth and I’ve been a mom to someone with Down syndrome for 14 years…
so, I’m not Polly-anna, crazy-in-love, rose-colored glasses girl…
just a mom who lives with her gem everyday.
This is my truth.
I don’t notice Down syndrome in my child.
I notice Patrick.
I can see him, his whole beautiful self, clearly.
That is the blessing of loving someone.
I don’t believe any myths now about anybody.
Because the myths that people tell me about Down syndrome are so far off the mark that it’s offensive.
My heart got bigger when Patrick was born.
My citizenship with the world was not only renewed it caught fire.
I see myself in every mother…
the one who forgets her child in a car…
the one who doesn’t have enough food in the fridge…
the one who can’t figure out which end is up and is so clouded in judgment she believes not living is an option.
My truth is clear.
But I wonder about the others…
who will share their truth??
Who will dare to consciously, mindfully crush to dust these pervasive, destructive myths.
Only with truth can freedom ring.
You can follow Beth at Grace in the Ordinary
Katina and Tim
Guest Blogger: Katina Aitkens
On Thursday, July 18, with Isabel, I went to Denver, Colorado. When we got there we went to our hotel and then to the Convention Center to get our registration packet. Then we went to dinner in the theater district.
On Friday, I went to the Friendship Club. In the Friendship Club we made heart decorations for the dance. I also went to a workshop with my mom about how to get a job. On Friday night I went to the 3-21 dance. I danced so much the bottom of my feet were all red. I had a blast.
On Saturday, I was in the orange group and went to workshops. I went to Stage makeup, Yoga and Living on Your Own. I learned a lot about Stage Makeup. I learned to become a cat with makeup. At Yoga, I learned how to do the tree pose, elephant pose, and warrior one. I learned how to live on my own doing my own laundry, cooking my own food, doing the dishes and making the bed.
I talked at the open mic. I spoke about my family. I learned the flash mob dance and we performed the flash mob dance after the last workshop on Saturday.
On Sunday, I went to more workshops. I performed in the talent show and sang “Baby, Baby “by Justin Bieber. I met Tim Harris from Tim’s Place. I want to own a restaurant just like Tim Harris. Then came the Grand Finale. At the Grand finale all the parents came and the self advocates were on the stage. We sang the closing song.
After the convention I went to my first professional baseball game. We saw the Chicago Cubs play the Denver Rockies. The Denver Rockies won 4-3. All of us from the convention sat together.
The best thing about the convention were the workshops. They were fun and I learned a lot. I also met Karen Gaffney. She swam across the English Channel. I also like to swim.
I made a lot of friends at the convention. I loved it and want to go next year.
*Note from Katina’s mom.
Since attending the convention Katina has become much more independent. She also has developed a sense of self care. The day after we returned from the convention Katina called our health club and scheduled her first apt. with a trainer. I didn’t even know she was interested in becoming healthier. She is also preparing many of her own meals which she has not done before. It is a treat to have dinner waiting for me as I arrive home from work. I encourage parents to have your child attend the self advocate convention once they become fifteen.
I graduated from San Diego State University in May of 2012, with my Bachelor of Science in Nursing. During my time at SDSU, my involvement with the California Nursing Students Association taught me the power that a group of committed individuals can have, and the personal rewards that come with making a difference in the community. In September of 2012, I moved to Sacramento to start at the Betty Irene Moore School of Nursing at UC Davis, and work towards my Master of Science in Nursing and Health Care Leadership. As a brand new Registered Nurse, I decided to take six months to adjust to school and a new city, before finding my first nursing job. I had been a nanny all through nursing school, and thought it would be a good, predictable fallback for me to pay my bills while I adjusted to my new life.
Enter: The Phams.
I was supposed to primarily be helping with their newborn twin girls, which was perfect for my background of working in neonatal intensive care. I would take care of the twins, while Mom, Sheree, took 4-year old Gabby, who has Down syndrome, to speech therapy and to school. Their 7-year old son Cameron was at school all day, missing most of the madness. As I spent more time with the Phams, I fell in love with all of their kids, especially Gabby – my best helper.
Gabby defied everything I thought I knew about Down syndrome. She was smart, funny, caring, adventurous, and social. In nursing school, I had learned what were considered ‘the basics’ about Down syndrome: it involved intellectual disability, frequent cardiac defects, higher susceptibility to infection, and sometimes leukemia. In reality, children with Down syndrome do deal with these challenges, but they can do almost everything that other children can, too. Gabby shares with her brother, cleans up her room, and practices changing diapers on her dolls – just like most 4-year old girls. Gabby taught me more about ‘special needs’ in six months than I learned in five years of university.
Gabby’s mom, Sheree, was one of the founding members of the Sisterhood, and I was lucky enough to meet other moms who had children with Down syndrome. I was curious about the birth experiences of these strong, amazing women, and learned quickly just how much change was needed. Many physicians and nurses at the top hospitals in Sacramento were offering nothing but dated, discouraging information, and new parents were left to find their own resources. My life was missing the community involvement that I had cherished over the past five years, and DSIA appeared in front of me as the perfect opportunity.
Since getting involved with DSIA, President Heather Green and I have been working on a medical outreach project. This includes basic education for both physicians and nurses, the Down Comfortor Package: A New Parent’s Guide to Down Syndrome, and contact information for the Parent-to-Parent Program. We are currently working to turn the project into a research study focused on the impact of standardizing the process of sharing a new diagnosis of Down syndrome, on parent satisfaction with the hospital experience.
It’s funny the way that life takes you exactly where you need to go. In April, I left my beloved Phams for my first nursing job at St. Joseph’s Medical Center, in Stockton, CA, and in June, I finished the first year of my Master’s program. I still see the Phams as often as I can, and am forever grateful for the six months I spent with their beautiful family. To the Phams and especially Gabby, the girl who taught me so much: thank you, thank you, thank you.