July 20th – 23rd
July 10th – Fun for EVERYONE!
originally posted by Robyn Merkel-Walsh MA, CCC-SLP at talktools.com
Presentation of the Problem:
Individuals with Down syndrome are at risk for what is known as Orofacial Myofunctional Disorders or OMD. OMD can impact the oral phase of feeding, oral resting postures and oral placement skills for speech clarity. OMD issues require tactile therapies which include Myofunctional and Oral Placement Therapy (OPT). Myofunctional therapy and OPT are not the same as non-speech oral motor exercises. The purpose of this article is to differentiate the difference between non-speech movements and speech–like movements in treatment for individuals with Down syndrome, and to explore various types of tactile therapies that may help facilitate progress.
What Kind of Therapy Are We Talking About and Is It Evidenced Based?:
The ongoing question in the field of speech pathology is whether or not Oral Motor Therapy is evidenced based. Evidenced Based Practice (EBP) according to the American Speech and Hearing Association is “the integration of best research evidence with clinical expertise and patient values” (ASHA, 2005). There is a misconception that EBP is limited to double-blind studies when in fact EBP is very centered on valuing feedback from the individual receiving treatment, and the clinical data collected in therapy. Not every method in the field of speech pathology has a large sampled, double blind study. For example, there is no proof that mirror aides in articulation therapy, but many therapist and patients report the value of mirror use when learning to imitate speech sounds. In addition no one study can prove, that another study is not valuable. No one study has proven that oral-motor, OPT or Myofunctional therapy is an invalid or unethical therapy method.
Another problem is that Oral Motor Therapy is a very general term that leads to confusion. Pre-feeding exercises, non-speech oral motor exercises, myofunctional therapy, strengthening exercises, swallowing exercises, oral imitation tasks and the use of oral speech tools were all being associated with the term Oral Motor Therapy. Though many therapists and parents see the clinical success of these therapies, there is still controversy in the field about the efficacy of these therapies. This is why in 2010 Diane Bahr and Sara Rosenfeld-Johnson wrote a landmark article in Communications Quarterly, outlining the difference between non-speech oral motor exercises (NSOME) and OPT. The major difference noted, was that NSOME are movements which are not related to speech sounds, while OPT therapy only includes speech-like movements (Bahr & Rosenfeld-Johnson, 2010). OPT follows the principles of Van Riper’s Phonetic Placement Therapy (PPT), and uses tactile cueing to help individuals who cannot respond to visual-verbal treatment cues (Marshalla,2008). The use of therapy tools in speech pathology is certainly not new according to Pam Marshalla (2012) , and therapists admit that even after hearing that oral-motor exercises may not have research to support their use, they still use them in practice (Bahr , 2011).
Over thirty-five years ago, The International Association of Orofacial Myology (IAOM) was formed, and has addressed the need for regulated educational opportunities and standardized college level credentialing of therapists to treat OMD (Snow, 2015). Experts in myofunctional therapy understand the connection between the airway, dentition, and tongue posture, swallowing and speech clarity. The Myofunctional Clinic of Bellevue has compiled an excellent list of EBP to support the use of myofunctional therapy with a variety of individuals (Bellevue, 2015). Gommerman & Hodge produced a study analyzing the effectiveness of myofunctional therapy and sibilant production and found that articulation therapy was achievable in only four therapy sessions after a tongue-thrust disorder was remediated in myofunctional therapy (Gmmerman & Hodge, 1995).
Oral-motor therapy has never been debated in cases of oral phase dysphagia or for tongue-thrust disorders; therefore it seems questionable while some experts in the field continuously debate the ethics and efficacy of these practices, especially in the Down syndrome populations, where we can predict issues with OMD. For example, Caroline Bowen has a publication on her website indicating that NSOME are unnecessary for children with Down syndrome (Bowen, 2015). The rationale is that to gain speech, speech must be worked on. There is some misconception that speech-language pathologists (SLPs) who work on OMD issues, are not working on speech, and this is not the case (Merkel-Walsh & Bahr, 2014).
The Importance of Treating Of Treating Orofacial Myofunctional Disorders in Down Syndrome:
When a baby is born with Down syndrome, there are some factors we assume to be true about craniofacial development, feeding and swallowing. In 1997, Sara Rosenfeld-Johnson identified the myths of Down syndrome. This included: a high narrow palatal vault, (Myth #1), tongue protrusion (#2), mild to moderate conductive hearing loss (#3), chronic upper respiratory infections (#4), mouth breathing (#5), habitual open mouth posture (#6), and finally, the impression that the child’s tongue is too big for its mouth (#7) (Rosenfeld-Johnson S. , The Oral-Motor Myths of Down Syndrome, 1997) . The reason Sara referred to these issues as myths, is because clinical evidence suggests that these issues can be prevented and /or improved by therapeutic intervention. For example Sara Rosenfeld-Johnson presented case studies at the American Speech and Hearing Association annual convention, highlighting improvements in an adult patient with Down Syndrome with one month of OPT ( (Rosenfeld-Johnson 2014).
Despite the myths, clinicians are often faced with a variety of oraofacial myofunctional challenges when treating individuals with Down syndrome. This includes but is not limited to: poor speech intelligibility, tongue thrusting, bruxing / teeth grinding, oral-phase feeding deficits and inappropriate oral habits (Bahr , 2001). It is important to treat these issues in conjunction with language-based speech therapy.
Since there is some confusion regarding terminology it is important to understand various types of OMD therapies. We can categorize therapuetic interventions into four categories:
- Pre-feeding/ Oral Sensory-Motor Therapy: These are exercises introduced to improve jaw, lip, and tongue movements as a prerequiste for safe, effective nutritive feedings. A pre-feeding plan is always one step ahead of a feeding plan. For example, if the goal is spoon feeding, the infant is receiving the primary source of nutrion from the breast and /or bottle, while the therapist works on the sensory-motor skills needed for spoon feeding (Overland & Merkel-Walsh, 2013). It is important to understand the oral-motor developmental hierarchy and age related normative data when designing a pre-feeding treatment plan.
- Feeding Therapy : Therapuetic feeding may focus on the oral phase of feeding, and/or the pharyngeal phase of feeding. Feeding therapy involves manipulation of the placement of food in th emouth, designing the tastes, temperatures and tastes to work with, and is always considerate of safety. Feeding therapy often involves the choices of therapuetic feeding equiptment , including adaptive seating, as well as therapuetic spoons, cups, forks, and straws (Overland & Merkel-Walsh, 2013).
- Oral Placement Therapy: OPT does not include NSOME. OPT is a specific therapy which involves tactile cueing in order to faciliate the articulatory postures required for precise speech sound production. OPT follows the principles of Van Riper’s Phonetic Placement Therapy in which: a therapist faciliates an oral posture with a therapy tool, drills this posture through repetition, and slowly fades out the tactile cue once the individual can produce the sound accurately (Bahr D. & Rosenfeld-Johnson, 2010)
- Myofunctional Therapy: Joy Moeller, a dental hygenist who specializes in myofunctional disorders, defines this therapy as a program used to correct the improper function of the tongue and facial muscles used at rest, for chewing and for swallowing (Moeller, 2008). Myofunctional therapy is essentially a combination of pre-feeding, feeding, and OPT. Dentists, lactation consultants, otolaryngologists, dental hygienists and SLPs treat myofunctional disorders. Myofunctional therapy often involves a hierarchy of exercises, which helps an individual simultaneously correct oral-rest posture, oral habits (e.g. thumb sucking) swallowing and speech sound production (Merkel, 2002).
Individuals with Down syndrome often may require all four types of tactile therapies since they may often present with feeding and speech issues. The problem remains, that many universities are not teaching these methods to clinicians, and families are struggling to find the services (Pierce & Taylor, 2002). In order to understand how these therapies can faciliate improvement, let’s look at some orofacial myofunctional issues associated with Down syndrome:
|Low jaw posture and tongue protrusion during oral rest posture
||Therapist can work on facilitation of lip closure by placing a Jiggler tool in between the lips to facilitate lip closure. (Overland & Merkel-Walsh, 2013).
|Reversed swallowing pattern/tongue thrust
||Therapist engages client in therapeutic straw drinking to facilitate jaw stability, lip rounding and tongue retraction. (Rosenfeld-Johnson S. 2009).
||Therapist uses appropriate biting activities, chewing, appropriate mouthing activities, and massage techniques (Bahr, 2001). Therapist implements a gum chewing program to facilitate an appropriate replacement for teeth grinding (Rosenfeld-Johnson, 2009).
||Therapist implements activities to superimpose lip closure with tongue retraction in order to improve strength and dissociation of the musculature, such as therapeutic horn and bubble blowing (Rosenfeld-Johnson, 2009; Merkel, 2002). The tools will be faded when the oral placement skill is achieved and the individual can produce the target sound without the use of the tactile cue/tool.
Individuals with Down syndrome may present with orofacial myofunctional challenges. While some therapists argue that non-speech oral motor exercises are not appropriate for these individuals, experts in tactile therapies have worked diligently to differentiate NSOME from OPT. There is Evidenced Based Practice is not limited to double blind studies and includes client feedback and therapeutic outcomes. Experts in OMD have provided evidence over the years to support the use of tactile therapies, and the relationship between swallowing and speech. Practicing clinicians are providing more case studies in the research base and most importantly, individuals who have engaged in OPT have positive reports of progress. There is no doubt that more studies need to be performed, and experts in OPT are hopeful to have more support from universities to perform larger group studies.
Robyn Merkel-Walsh MA, CCC-SLP is a speech-language pathologist with over 20 years’ experience devoted to oral motor, feeding and OPT. She works full time for the Ridgefield Board of Education, in addition to her private practice and affiliation as a lecturer for TalkTools ®. Robyn is the Acting Chair of the Oral Motor Institute and has recently presented a poster session at the ASHA convention. You may contact Robyn at email@example.com.
ASHA (2005). Evidence-based practice in communication disorders [Position Statement]. Retrieved from asha.org: http://www.asha.org/policy/PS2005-00221/
Bahr, D. & Rosenfeld-Johnson (2010). Treatment of Children With Speech Oral Placement Disorders (OPDs): A Paradigm Emerges. Communications Quarterly, vol. 31 no. 3 131-138 .
Bahr, D. (2001). Nobody Evert Told Me (or my mother) That ! Arlington, TX: Sensory World.
Bahr, D. (2011, September). The Oral Motor Institute. Retrieved from The Oral-Motor Debate Part I: Understanding the Problem: www.oralmotorinstitute.org/mons/v3n1_bahr.html
Bellevue, M. C. (2015, March ). Sudies showing efficay of orofacial myofunctional therapy. Retrieved from Myofunctional Clinic of Bellvue: http://myofunctional.com/internal/resources.html
Bowen, C. (2015, January 13). Controversial Practices in Children’s Speech Sound Disorders – Oral Motor Exercises, Dietary Supplements, Auditory Integration Training . Retrieved from Speech-Language Therapy.com: http://www.speech-language-therapy.com/index.php?option=com_content&view=article&id=28:controversy&catid=11:admin&Itemid=122http://
Gommerman, S. & Hodge, M.M. (1995). Effects of oral myofunctional therapy on swallowing and sibliant production. International Journal of Orofacial Myology, 21:9-22.
Marshalla, P. (2008, April). Oral Motor TReatment VS. Non-Speech Oral Motor Exercises:Historical Clinical Evidence of “Twenty-two Fundamental Methods”. Retrieved from The Oral Motor Institute.: www.oralmotorinstitute.org/mons/v2n2_marshalla.html
Marshalla, P. (2012). Horns, whistles, bite blocks, and straws: A review of tools/objects used in articulation therapy by Van Riper and other traditional therapists. . Retrieved from oralmotorinstitute.org: www.oralmotorinstitute.org/mons/v4n2_marshalla.html
Merkel, R. (2002). Systematic Intervention for Lingual Elevation . Tucson, AZ: TalkTools.
Merkel-Walsh, R. & Bahr, D. (2014). Ages & Stages. Retrieved from What evidence-based, oral sensory-motor treatments are effective for speech disorders?: http://www.agesandstages.net/qadetail.php?id=31
Moeller, J. (2008). What is myofunctional therapy ? Retrieved from myofunctional-therapy.com: http://www.myofunctional-therapy.com/what-is-myofunctional-therapy.html
Overland, L. & Merkel-Walsh (2013). A Sensory -Motor Approach to Feeding. Charleston, SC: Talk Tools.
Pierce, R. & Taylor, P. (2002). Rationale for including orofacial myofunctional therapy in universaity training programs. International Journal of Orofacial Myology., 24-34.
Rosenfeld-Johnson, S. (1997). The Oral-Motor Myths of Down Syndrome. Advance Magazine for Speech-Language Pathologists.
Rosenfeld-Johnson, S. (2009). Oral Placement Therapy for Speech Clarity and Feeding. Charleston, SC: TalkTools.
Rosenfeld-Johnson, S. (2014). Using Tactile Cues to immprove speech clarity in the adult rehabilitative setting. ASHA Convention. Oralndo , FL: TalkTools. Retrieved from Talk Tools.
Snow, M. (2015, March 13). International Association of Orofacial Myology. Retrieved from IAOM: http://www.iaom.com/history.html
NOVEMBER 4, 2014 BY
re-blogging from getcreativejuice.com, with permission
i’d like to introduce you to Ainsley. she is six years old. Ainsley loves to dance, swim, play with her dolls, run around with her friends, and wrestle with her brothers. she loves roller coasters, making friends, and school. she attends kindergarten. Ainsley has down syndrome. down syndrome doesn’t define her. she is not a down syndrome girl. she is a little girl, who just happens to have down syndrome. really, she does anything and everything any other little girl her age might do!
Ainsley is one of my daughter’s best friends. i remember distinctly the first time we met Ainsley and her mom at the park years ago. since that time we have attended preK together and are now in kindergarten in the same class. Ainsley and her family have opened our hearts and taught us so much about friendship, love, and awareness. i am forever grateful for the things i have learned and the way that my heart has been touched by Ainsley! i recognize that having a best friend with Down syndrome is a gift not every child (or parent of that child) is blessed to experience. because of this, i wanted to share some of our experience as well as interview Ainsley’s mom with questions that would help others to understand different aspects of having a child with down syndrome.
now i’m sure this will embarrass her, but i’ll say it anyways – Ainsley’s mom is one of those people you meet that just ooze goodness. she is the most loving, kind, patient, thoughtful, and giving people i have ever met. but not in a way that makes you feel like a bad mom because she is invincible or perfect – just in a way that makes you grateful to be her friend and learn from her… human, but a really really awesome one. as much as my daughter and i have been blessed by Ainsley, i have also been blessed to know her mom. she is a fierce advocate, but also a patient teacher. she is understanding of those who don’t know much about down syndrome, and an open book about her experiences. here are some of the things she shared in our interview….
What do you want people to know about Ainsley?
‘Ainsley is more alike than different. She is like most 6 year old girls. She loves to dance, to swim, to play with her dolls, to play princess dress up, to run around with her friends, to wrestle with her brothers. The differences she has aren’t really that different. They are not these incredible boundaries that set her apart from other kids her age. She does have some delays, and it takes her a little longer to do things. But a lot of kids have delays to a degree. The great thing is, a bit of patience goes a long way with this little girl. Ainsley has a tremendous drive to succeed and while it does take her a little longer, she does eventually get there. I have two other kids- two boys- and I don’t give Ainsley any special treatment. I treat her just how I would treat them. What I would say to others is to do the same. Ainsley is just like any other 6 year old girl and I would like her to be treated as such.
In short, what I really want people to know about Ainsley is that Down syndrome doesn’t define her. She is not a Down syndrome girl. She is a little girl, who just happens to have Down syndrome.’
What is it like being a mom of a child with Down syndrome?
‘Being a mom to a child with DS is just like being a mom to any other kid. There are good days, amazing days, but also the difficult ones that leave you frustrated and discouraged. Parenting is hard in general; being a mom is being a mom. With Ainsley, it might mean a little more patience, more research on therapies, or better time management juggling those therapies, maybe extra hours spent on homework. But every mom has some kind of issue, some kind of puzzle they have to solve in their day to day’
What have been (or are) the hardest moments for you as a mom to Ainsley?
‘This week, Ainsley got to bring home the classroom bear and had to write and draw a picture about what they did together that day. Ainsley came home over the top excited about having Corduroy and she wanted to sit down and draw her picture of them playing at the park. She ended up getting frustrated because her picture wasn’t even close to what she wanted it to look like, and it was nowhere near the level of her peers. She is 6, and fine motor activities are probably one of the hardest things for her to do. While she has made tremendous advancements and tries very hard, she still cannot legible write her name; for most it would look like chicken scratch. Its moments like these that break my heart. She knew what she wanted to write, told me what she wanted to write, but despite all of her efforts she just couldn’t make it happen, because due to her hypertonia, she doesn’t yet have the hand strength and coordination to make it happen. There have been a lot of big things, but really it’s these little moments, where she knows that she is a little different that are the hardest for me.’
How do you balance family life and other children with a child who has special needs?
‘We try to treat Ainsley just like our other kids, but she does get a lot of extra attention when it comes to therapies and the extra time we have to spend to work with her on any number of things from homework to role playing what to do in a new situation (sometimes she’ll get extremely uncomfortable under unfamiliar circumstances). It could be a very slippery slope making the day to day centered around Ainsley, and so we actively have to try to get out of that mindset. First, in a lot of these situations, we try to incorporate the other kids as much as possible. Ainsley learns more from her bothers than she does from us, so we make them the teachers, and include them as much as possible. They enjoy it and it dilutes pure focus on Ainsley and makes it more about the family.
Second, we make a conscious effort to spend one on one time with our other two kids. Owen, the oldest, gets a lot of individualized attention from me and my husband. Whether it is a mother-son date, or cubscouts, or staying up a little late to watch the world series, we make sure he as things that are just for him. And for the youngest, my mornings are all about me and him as the elders are in school.
In the end, what we try to do is to make sure each of our kids feels special, loved and a part of our family. Each one of our kids brings something special to our family and we are blessed to have them in our lives’
How has having Ainsley as a sister shaped your boys?
‘We have two boys Owen, the oldest, and Wyatt the younger. Wyatt will be 3 in December -right now they are little buddies; they play together, learn from each other, and have fun together! Owen, has the biggest heart, a kind soul, and is a very compassionate boy. He was only 18 months when Ainsley was born and to this day is still one of her biggest cheerleaders. He grew up being a part of Ainsley’s therapies. He watched how difficult it was for her to do things which came easy to him, and at a young age was able to understand that not everyone does things at the same pace, that everyone has little differences and that that is okay. We hope he takes this notion with him for the rest of his life. We are already seeing signs of this in him in how he acts with his peers – he is someone who is friends with everyone and very accepting of other kids no matter what the circumstance’
What are your hopes and dreams for Ainsley?
‘My hope is to watch Ainsley walk across the stage at High School Graduation to receive her diploma with all her friends that she has grown up going to school with! To have teachers, educators, and parents believe in her to be included through the school years. Long-term, I want to see her live a happy life and give back to the community! I want her doing the things she loves to do. We would love to see her go to college, get married and live on her own.’
What are your favorite moments, memories, and milestones with Ainsley?
‘Ainsley has been a fighter since birth. She was born at 30 weeks weighing only 3 pounds. On Christmas Eve 2008, after spending her first 98 days of life in the NICU we were told we would finally be able to bring our little girl home. It was the greatest Christmas present ever.
Ainsley has essentially had a menu of therapies since she was 4 months old –physical, feeding, occupational, speech – it’s a long list. She has to be taught how to do many things we take for granted. It might take her a little longer to do them but she can and will do them. Her walking for the first time was truly an amazing milestone. Walking is millstone for all kids, but it was a long road for Ainsley to get there. So when our little girl walked across the room for the first time at 2 years 8 months she had everyone in tears!
Another one of my favorite and most recent moments is when I realized Ainsley had a group of girlfriends! I remember being scared when we were first told our daughter had Down syndrome that she wouldn’t have a group of friends, she wouldn’t be invited to playdates or birthday parties. Last year, Ainsley started Transitional Kindergarten and she was fully mainstreamed. I remember every day I would hold my breath as I sent Ainsley to school, praying that she had a wonderful day and had some friends. As the weeks went on, I got to know the kids that Ainsley would come home talking about and of course this was the start of Aubrey’s and Ainsley’s friendship. As the year went on, I watched Ainsley play with a group of girlfriends that truly accepted her for who she is. They all would play together almost every day after school and she was invited to playdates, parties, and we ended up spending a lot of the summer together with swim playdates. She even started dance class with some of the girls. I know all parents worry about their kids, and whether or not they find a group of friends. We too have that worry for our sons, but with Ainsley and the worry is hard to describe, it’s just greater. She has serious boundaries in her speech and her physical capabilities, and it could be really easy for kids to just pass her by. But we were and are truly blessed with this group of girls. It’s amazing watching all of these girls interact and truly love and accept Ainsley, and always brings tears to my eyes and so much joy to my heart!’
(photo from the princess party for all the TK friends!)
as aubrey’s mom all i could want for her is to be kind, loving, and patient. aware yet accepting. for all of the times and ways i have tried to teach her this, i don’t think i will be able to claim any of it. Ainsley has changed her heart and made her a better person. as i watch them laugh and run and play together my heart is so full of gratitude for sweet Ainsley and her family. she has taught us another dimension of love and friendship.
this little group of girls in the photo above are just that – best friends. some are tall, some are short, some have curly hair, some have straight. some wanted to be belle and others cinderella (frozen was not out yet or this photo would look a bit different i’m sure lol). some play soccer, some do dance. while Down syndrome is something that makes Ainsley different, she has taught our girls that it is as irrelevant to her ability as a friend as those other differences i listed. they laugh together. they play together. they learn together. they make memories together. they hug saying good bye. they celebrate their differences.
How can parents teach their children about Down syndrome? What resources do they have? How can you teach your child to be a good friend to someone with Down syndrome?
parents lead by example – so set one of acceptance and understanding. here are some great resources to become knowledgeable about Down syndrome:
DS Information Alliance | National DS Society | National DS Congress
there are also amazing videos out there! watch them with your kids!
here are some of my favorites…
this first one is GREAT for young kids! this is the one that Ainsley’s mom shared with the preK and kindergarten classes to help them understand about Down syndrome. it is based off a book and real life friends isabelle and charlie. my favorite part is that it is a true story written by charlie – and the video is narrated by him! its adorable!
this is a great video for elementary – high school kids and talks about the bond between several sets of friends and gives lots of advice on how to be a friend to someone with Down syndrome
‘we are more alike than different’ this is a sampling of the short videos that were made for this campaign. it is a great message and features several adults with Down syndrome talking about their interests, hopes, lives, and dreams!
thank you for your friendship sweet Ainsley! we love you!
In the June of 2010, my husband Ricky and I found out our daughter would be born with Translation Down syndrome. At this time, I was struggling with the decision of whether or not I would continue my pregnancy. I was completely terrified at the thought of having a child with Down syndrome. I was afraid my child would not have a “normal” life and may even “suffer.”
Going through my grief, I reached out to the National Down Syndrome Society. They then referred me to our local Ds support group – The Down Syndrome Information Alliance (DSIA). I called DSIA’s hotline and was offered much needed support via phone and educational literature via mail. The following week, I requested to meet a Parent Mentor, Heather Green at a local park. I asked her to bring her daughters.
I held in the tears as we drove up. I still felt a little fragile but I was determined not to breakdown. My husband and 4-year-old daughter, Maricela were with me. I was so nervous to meet Heather and more so her daughter with Ds, Gabby. As we walked up to the playground my eyes dashed side to side rapidly trying to find Heather and her kids. My eyes stopped instantly when I saw Gabby (9 years old at the time) She was spinning around with her younger sister Lucy on a merry-go-round and they were ALL smiles!! “No suffering was going on there”, I thought to myself.
Then I saw Heather, the DSIA Parent Mentor, walking up with her youngest daughter in her arms, she shattered any stereotypes I had left in my mind. She was a very young Mother with three beautiful girls…. just like me.
Heather introduced herself and had her little ones say hello to us. I remember I was trying my hardest not to stare at Gabby but I think she was on to me. When it was her turn to say hello to us, she stayed looking down to the ground and said very quietly under her breath, “Hi.” Heather must have not heard Gabby say a word because she then asked Gabby again to “Say hello, honey.” Gabby then sighed like a little total diva and said, “I already DID Mom” with a slight eye roll. I chuckled; this simple meeting and interaction with her showed me she was just a typical girl with feistiness and spunk. Just like my daughter Maricela. After the introductions the girls all ran off to play together.
I sat down with Heather she was able to answer my many questions. It was great! I now had answers to my questions that only a fellow parent could answer. It was time to go home, the kids were getting hungry. As we were saying our goodbyes, Gabby ran up to Heather, jumped up to hug her and they kissed and touched noses – it was the sweetest sight ever! Heather then asked Gabby what she wanted for dinner? She promptly replied “Hot dogs and french fries.” I thought to myself, “Wow!! How normal, she’s just a regular kid with typical kid taste in food.”
We finished our goodbyes and left the park, in the car ride home I was able fantasize about my baby girl’s future! I imagined her walking, running and speaking to express herself just like little Gabby!! My heart was at ease finally… I was finally at ease.
When Aliyah was three months old our family attended our first quarterly parent support meeting hosted by DSIA. I was able to meet other local families and many children of all ages born with Ds. Our family also attended many of the fun DSIA events put on throughout the year. In Oct of 2011 we participated in the annual Step Up for Down syndrome walk for the first time. It was so amazing for our extended family to interact with our new friends in the Down syndrome community.
I was determined to support new parents especially those with Prenatal Diagnosis. I became a Parent Mentor and have enjoyed meeting new families. Today, Aliyah is 4 years old she is a healthy, smart little dancing diva. She is also fully included in a Montessori school with typically developing peers. DSIA gave me the support and tools to start my journey with Ds and now I would like to give back. I am honored to be on the Board of Directors for DSIA and excited to serve our Ds community.
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.