What's In A Word? What's In A Look?

Today is Spread the Word to End the Word Day - where people are encouraged to pledge to NOT use the word Retard. When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.

Of course, this word is especially hurtful when we hear our friends and family use this word. So, it's important to us to educate and help explain WHY this word hurts us so. 

We all know that the saying "Sticks and stones might break my bones, but words will never hurt me" is the farthest thing from the truth, right? 

But what about body language? 

A few weeks ago, DSIA had our first Self Advocate (person with Down syndrome) join our board of directors and she attended her first meeting. I loved spending time with her. She was funny, smart and full of spunk.

Unfortunately, there was a mis-communication about who was giving her a ride home/picking her up after the meeting. So, I waited with her outside. Our board meetings are downtown, on Capitol Mall. We waited on the corner outside a really nice restaurant. It was the day before Valentine's and there were a lot of people coming and going into the restaurant. We stood there talking, looking for her ride, checking our cell phones....looking perfectly "normal."

Except not.

And the looks from others proved it to me.

Disgust

Horror

Disgrace

Bothered

All words I would use to describe how people felt when they saw us. All because one of us looked different. I would love to think it was because of my way too casual look of sweatpants, but, I am heartbroken to know it was because she had Down syndrome. Because she was different. 

So much work done, so much much much more to do.

And I will not stop. My hope is Gabby will never know those looks.

And if she does, my hope is she won't care. She knows better.

Exciting and Promising News for Gabby Girl!

I wanted to share with you a powerful appointment that we had for Gabby on Thursday.

For a little bit of history… Gabby was diagnosed with Apraxia when she was much younger. She also has Celiac Disease – an allergy to gluten. 

Gabby’s speech seems to be coming more and more less clear. I have a hard time understating what she says sometimes, when I used to be the one person that understood everything she said.  Once we got her hearing issues sorted out (she gets yeast infections in her ears that causes blockage and a conductive hearing loss) I knew there was something more to her unclear speech.

Renee Roy Hill is a speech and language pathologist with 11 years of professional experience and is the owner of Crossroads Therapy Clinic in Texas. She provides therapeutic assessments and program planning for adults and children with oral-motor/oral-placement, feeding and motor speech deficits. Renee is a lecturer for professional enhancement courses as part of TalkTools Therapy® / ITI’s speakers bureau, is the author of the TalkTools Therapy® Apraxia Kit and is co-author of the Ice Sticks Program. She presents one and two-day courses on Oral-Placement Therapy techniques, Apraxia and Assessment and Program Plan Development.  She also conducts off-site evaluations and provides parent/home interventionist training seminars to implement home-based therapy programs.

She was in town this week to lecture for SASHA on Friday. DSIA paid her hotel to come early two extra days, allowing families to make appointments with her for evaluations or program follow up appointments (If they had previous evaluations by her or Sarah Rosenfeld Johnson). Our family decided to make an appointment with her. 

Renee evaluated her and found out so many things about Gabby that we never could “pinpoint” or figure out and I would like to share.

Gabby is super hypo sensitive. Renee was able to put a toothette very far down the back of her throat without Gabby gagging. Gabby has a left weak cheek and strong right cheek. And a strong left jaw and weak right jaw.

Renee observed Gabby eating. She chews with her mouth closed, but only because we have told her to. She actually does not have enough strength to chew properly with her mouth closed. When eating, Gabby moves her mouth up and down, but her food stays in the center of her mouth and never gets chewed. Then Gabby requires a big gulp to get the food down – because she has such weak muscles. So, Gabby is swallowing big gulps of air and whole pieces of food. No wonder her tummy hurts all the time!

Gabby has big mouth movements and small mouth movements… but nothing in between. And these are the movements you need for good, refined speech.

I always assumed Gabby’s aversion to certain foods is because it is typically gluten based food she avoids – crackers, cereals, cookies, chips, cakes, etc.… Renee assured me that Gabby avoids those foods because she knows she can’t chew them and she can’t swallow them. She knows she would choke. Because she has such weak muscles and is so hypo sensitive, not only would she choke, but also she doesn’t have the gag reflux to get food back up.

Gabby then read a book to Renee. Renee closed the book, looked at me and said Gabby does NOT have apraxia.  Most of you know I could care less about diagnoses/labels, just tell me what I need to do to help her.

Renee did an amazing job of explaining how severe Gabby’s muscle weakness is, yet, reassuring us that there is no reason that Gabby cannot have clear speech.  Gabby is super smart and has found many ways to overcompensate for her weakness.

Gabby’s ST from school was there for the appointment as well. While observing the assessment she stated, “Well, at some point, Gabby will only reach a certain level, right?”

Renee reassured us that NO ONE levels out…. Keep strengthening your muscles… You don’t stop going to the gym once you’ve reached your ideal weight.

I am really pleased with her treatment plan. 15 minutes a day, seven days a week of exercises for her mouth, jaw, etc.…. and one feeding exercise… 6 bites reminding Gabby to chew with back teeth. After that, Gabby is done with “therapy” Let her eat at mealtimes the way she wants to – eating needs to be enjoyable and in time, the correct eating with transfer over to mealtimes.

When I got home, I thanked Andy for the sacrifice (financially) our family made for this appointment and he said something to me I will never forget. He said “We did not do this just for Gabby. We did this for our whole family. Gabby deserves to be heard and we deserve to hear her”  Many of the reasons I love him so. 

I am excited about these changes. I am excited to hear all Gabby has to say. I am excited to have a conversation with her on the phone and not have to ask what she said. I am excited to see her blossom into the next stage of her life, as she is able to more openly communicate with her family and friends.

A Perfect Day for a Walk

    Each year Missy's non-profit puts on a one mile walk to raise awareness for Down syndrome through her organisation DSIA (Down Syndrome Information Alliance). This year was the second one I was involved with. Last year's walk was at the beginning of our fourth month of courtship and I think I was still kind of wet behind the ears in the world of dating then. Missy had told me she was the organizer of the walk. My naivete led me to believe that this meant she just made a few calls to get the acting board members to fulfill the jobs that were needed for the walk to happen. So for the second or third time in my life I was wrong. It doesn't happen often but every now and then I slip just a little.

        As a side note, we used to use the term E.O.E. (expert on everything) for another family member however I hear it directed at me from time to time now. I might never have had any formal training in either electronics or aeronautics, but by god I'm sure I could command the space shuttle on a rainy day with the loss of the auto pilot while my buddy Ben straps in as my copilot after we both have had a double crown and coke at 7am on a monday morning. 

    Last years walk prove to be a lot more work than I ever thought it would be. Truth be told Missy organized, helped plan, commanded, lead, directed, and damn near did every job imaginable for the walk. One acting board member helped her in the area of registration but that was about it. I was amazed at how much she did and how good it went. Well this years lead up was a bit more. They partnered with a new software company to make it easier and more user friendly, which helped in many areas and hindered in others. They also brought on new board members unsure in the process leaving extra loose ends for Missy to manage. And manage she did. Our house turned into a T-shirt storage center for the registrants who received shirts. UPS was knocking on our door every day at nap time for three weeks it seemed. She would get up at 5am to get two hours of good work in before getting the kids up and starting the household morning routine. She took phone calls from 8am till 9:30pm. She worked an hour or two after the kids went to bed and through-out the day she was either working on the computer, at a meeting, picking up walk items or packing boxes for the event. 

    The morning of the event Missy and I were at the location by 6:45am, even though the walk didn't start till 10am. There was a lot of set up and getting ready to do. Missy was once again in charge and she ran the event flawlessly. There were about eight hundred registered walkers, forty-five volunteers, twenty-five vendor booths, a crew who volunteered time and resources to cook lunch for eight hundred people, a crew who volunteered to collect recyclables, an audio/video company, a band, a kids puppet show, a dance and sing team from a local theater, a local police K9 unit, a local fire department with their fire engine, table and chairs, a one mile walk course marked and barricaded from traffic, day of registration and so many other little things; and Missy did it all. Again the same board member from last year, Lisa helped out a lot and a new one Hillary played a vital role in the rounding up of volunteers, yet it was Missy who put it all together and ran it. The walk is the main fund-raising that DSIA does each year and it sets the years financial goal for what the organization is going to be able to do. This year turned out great. The overall numbers are down just a little bit from last year and I know she's a little upset at herself for that. However, I saw what it took first hand and I watched how hard she worked, so if you ask me she hit a home run. I heard nothing but great things from the participants, where several of them stopped her to expressed how much smoother it went this year as compared to years past. 

    With all the prep and all the hard work it's easy to forget the whole reason for the event. For DSIA the reason is to raise awareness, raise funds and to support other families in the Down syndrome community. For Missy the only reason is Gabby. The weekend of the walk Gabby and Lucy were scheduled to be with us. However, Gabby and Lucy's grandmother on Jorge's (their dad) side was flying in from Florida just for the walk. Missy had agree to switch the weekends with the one stipulation that once the girls got to the walk they were now on "her time". She wanted to share the walk with Gabby and our other five kids and she wanted it to be known. Can you blame her? Hell I can't, I commend her for knowing what she wanted and asking for it. The relationship between Missy and Jorge is really a good one and he completely understood her want and need for the girls to be with her. So they were. 

      

    In the middle of the chaos of running an event like this Missy never skipped a beat with the kids. She held them and walked with them, she fed them and played with them, she talked to them and listened to them. It was just like any other day to be honest. She did an amazing job being there for the kids, for me, for our families, for her friends, for the other families and for every child there with or without Down syndrome.It was a perfect day for a walk!!!!!!!

     I don't know if Gabby understands the effort her mom puts into DSIA in the hopes of helping other families navigate life through the rough waters that might be created due to a diagnosis of Down syndrome. I'm not sure if she realizes how she has impacted her mom's life work to support all families including those who have a child with special needs. I don't know if she will ever comprehend how one tiny little chromosome that stuck around has been the catalyst for the care and support of thousands of people through the words, hugs and tears that her mom has shared with so many. But when I look in her eyes I undoubtedly know she understands the depth of the love and gratitude her mother has for her because of the person she is. She is Gabby, daughter of Missy and that's all that matters to us. 

DSIA website