As a Toledo native and a sibling of somebody with Down syndrome, I am always excited to connect with families in the DSAGT community. Lately, my focus has been on raising awareness of sibling dynamics. My 18-year-old sister, Sara, has Down syndrome, and I believe she has had a significant influence on who I am today. In my adult years, I have examined my relationship with Sara from a broader perspective by talking to other siblings like me. Although everyone’s story is different, most people I have spoken with agree that having a sibling with Down syndrome is a life-changing experience.
For my senior thesis at the University of Michigan, I interviewed 19 non-disabled adults who have siblings with Down syndrome and analyzed their responses. I also coordinated a siblings workshop this spring where non-disabled siblings, or “sibs,” could mingle, play games, and share thoughts about their brothers and sisters with Down syndrome. In each setting, I noticed patterns that I thought parents and other members of our community may be interested in hearing.
For many of the people I interviewed, having a sibling with Down syndrome was not all sunshine and roses. For example, they mentioned feeling embarrassed, because sometimes kids with Down syndrome do odd things in front of other people. A few siblings said they felt uncertain and wondered, “What’s he gonna do this time?” whenever they went out. Many also said their parents gave their siblings with Down syndrome extra attention, which sometimes made non-disabled siblings feel less valued.
Some interviewees felt that as sibs, they had to follow certain unspoken rules. For instance, many seemed to believe that it is wrong to feel frustrated with their sibling with Down syndrome, and if they do feel frustrated, they shouldn’t complain. One participant explained it this way: “You can’t really be mad, but you’re mad.”
Despite these difficulties, there were a lot of positive qualities to these sibling relationships, too. No two people with Down syndrome are the same, but people who know them do tend to describe them as really fun and loving. Interviewees told me stories about everything from funny Skype conversations to one brother’s Gordon Ramsey impressions. Many participants kept these warm relationships with their siblings into adulthood. Some people felt their siblings needed them, so they felt guilty when they had to move away or spend less time with their siblings. One interviewee said, “Other siblings don’t need you as much, but she definitely does.”
Overall, everyone in my sample said their siblings with Down syndrome had affected who they are. Several said their sibling made them a “better person.” Many people also felt that handling a sibling with Down syndrome made them more accepting of differences, and made them grow up faster. Some participants measured people’s character based on whether they got along with their siblings with Down syndrome. One woman even said her sister was a “monitoring stick for boyfriends” — potential suitors had to receive the sister’s approval to stay in the picture! Finally, having a sibling with Down syndrome drew many people to disability-related volunteer work, careers in special education, and helping professions such as nursing and counseling. (This pattern holds for me personally as well — because of Sara, I am starting law school at the University of Michigan this fall to pursue special education law.)
The sibling workshop in May was a wonderful opportunity to see the above attitudes in action. The kids at the workshop talked about many activities they enjoy with their siblings, including playing video games, wrestling, and singing and dancing. Just like the adults I interviewed, sibs expressed a variety of feelings towards their siblings, such as happy, frustrated, and proud. Common complaints included annoyance when the sibling with Down syndrome got into the other kids’ belongings, and embarrassment over socially inappropriate behaviors. Several attendees said that they worried about their sibling’s safety — that a baby brother might fall down the stairs, or that a teenage sister might venture out on her own and get lost.
One activity I found particularly interesting was when I read out pretend questions from siblings of children with Down syndrome. The workshop attendees had plenty of wisdom to share with these hypothetical peers, showing that even in childhood they have gained important insights about their siblings. As a group, we discussed the unique pressures sibs face. In this vein, the older participants pointed out that sibs do not have to be perfect to make up for their brothers’ and sisters’ limitations. They also asserted that kids without disabilities are just as important as their siblings with Down syndrome, even if they sometimes get less attention.
In fact, the advice offered during our workshop parallels the lessons that my adult interviewees said they learned. The most common advice they gave was to treat a sibling with Down syndrome “like you would treat any sibling” — love them, play with them, and so on. Next, they pointed out that non-disabled siblings shouldn’t forget about their own wellbeing. They said sibs should be open with their parents when they’re frustrated, and that it’s good to “talk to someone about it,” meaning connecting with sibling organizations, a counselor, or another trusted adult. Additionally, they said it’s normal to “wish or wonder what it would be like to have a normal sibling. […] Don’t feel like you have to hide that feeling.” Finally, participants said that having a sibling with Down syndrome teaches you “more than you ever imagined,” especially patience and putting your life in perspective.
My hope in sharing my thesis and helping sibs connect is to give families a context for their own experiences. There is no wrong way to feel about having a sibling with Down syndrome — it’s perfectly normal to feel happiness, confusion, worry, anger, love, and more, sometimes all at the same time. Many parents wonder how a new baby with Down syndrome will affect their other children. I won’t sugarcoat it — there will be challenges, and it is very important to keep open lines of communication and make sure that siblings without disabilities feel appreciated. But above all, I want to reassure parents that the other kids in the family are going to be just fine.
I will sign off with the words of one of the young women I interviewed: “It seems bad at first, intimidating and scary. But once you get to know them, and see their personality, it’s like, how could you live without them?”
Close your eyes, clear your mind, and concentrate on this phrase:
What are the words and images that come to mind? For some parents, toilet training was easy. For others, not so much. Potty training can be very difficult for some children and many parents become easily overwhelmed and frustrated.
As a behavior analyst, I’ve treated many children with potty training challenges. Although it seems bizarre, toilet training is one of my favorite focuses in behavior therapy. I absolutely love toilet training because the outcome is simple: either you do it appropriately (eliminate on the toilet) or you don’t (have an accident). Of course, there are many curves and obstacles that might occur during the toilet training road trip, but the end goal is the same for everyone – independent toileting. I’ve had the pleasure of training children from the age of 3 to the late age of 19, and it’s an amazing feeling to have parents say, “I never thought he could do this” at the end of therapy.
So, if you’re on the journey of toilet training and you’ve hit a few road closures or if you haven’t yet mapped out your voyage, hop in and buckle up!
The average child is ready to begin toilet training around 18-30 months of age. University of Michigan states that by 3 years old, 98% of children are toilet trained during the day. (Nighttime training is a completely different story and could have a blog dedicated entirely to it. For the purpose of this blog, we will focus on day training only.)
How do you know when your child is ready to begin training? Typically, when kiddos are ready to begin the process, they show an interest in the potty, can stay dry in their diaper for at least 1 hour at a time, have some form of communication skills, have predictable bowel movements, and demonstrate some form of physical signs during elimination (squatting, running away, and glazed-over eyes). Please keep in mind, though, not all children will demonstrate these readiness skills. Children with autism and Down syndrome, for example, may not demonstrate the readiness skills similar to their peers. This does not mean you should wait until they are “ready”. For some children, they will never demonstrate these signs, and you’ll be waiting forever. The first toilet training case I ever had was a 19 year old with autism. The caregivers continued waiting until he was ready to train, but he never seemed to be. Overnight, it seemed, he turned 19.
Toilet training can be a lengthy process, as you may know. Some children may achieve this skill immediately, and others might take several months. When starting a toilet training plan, I always recommend that families are able to commit to at least 3 months without major changes. If a new baby is coming, a change of homes is anticipated, or a big vacation is planned, wait until after these events have occurred.
Once you’re ready to start, you’ll want to first take data on your child’s current toileting behaviors. Do this BEFORE you remove the diapers/pull-ups. In order to do this, simply record whether he is wet or dry every half hour. This will give you a rough idea as to his typical toileting pattern. Most people show a pattern in their toileting behaviors, and this can help when scheduling toilet sits in the future. Once you’ve taken data for 3-10 days, you’re ready to begin.
· Underwear (lots of it!)
· Extra clothing
· A small insert for the toilet seat (if your child is smaller)
· A footstool to allow for a 90 degree angle at the knees when sitting
· Preferred beverages (not including milk)
· Preferred toys that can be used during toilet sits (books, iPad, etc.)
· Strong reinforcers (small favorite toys, snacks, or other tangible items that are not available during any other part of the day. This is very important – if the items are available freely throughout the day, the child has no incentive to participate in the process.)
· Schedule of toilet sits. Once you’ve taken data on your child’s typical toileting times, you can use this information to predict when she might eliminate. I typically start toilet sits every 30-60 minutes, with longer periods of time after successes.
1. About 15-20 minutes prior to the scheduled sit time, provide your child with about 6-8 ounces of a preferred beverage. This will increase the likelihood that your child will need to eliminate.
2. At the scheduled toilet time, communicate to your child that it’s time to use the bathroom. ***For children who are highly resistant to even entering the bathroom, you’ll need to start with a pairing procedure first. Essentially, you’ll want to engage your child in fun activities that occur just outside or around the bathroom, while gradually moving yourself into the bathroom. During this time, no directives are given regarding toileting. You’re simply making the bathroom a fun place to be!
3. When you enter the bathroom, prompt your child to pull his pants down and sit on the toilet. It’s often helpful if your child is wearing sweat pants or other easily-removable pants during the initial training sessions. Depending on your child’s developmental level, you can provide physical assistance during this step if needed.
4. While sitting on the toilet (and making sure knees are at a 90 degree angle with the stepstool), provide your child with books, iPad, or other small objects. Tell your child to “go potty”.
5. If he successfully eliminates, say “Great job going potty!” and provide him with a small treat (favorite toy, snack, or other item). While the germophobe in me hates this, it’s very important that the reinforcer is given to your child immediately after he eliminates and is still sitting on the toilet. This will help him understand that eliminating on the toilet is the appropriate response. For example, if Johnny urinates on the toilet, say “Great job going potty!” and give him a Skittle immediately.
6. If he does not successfully eliminate, say nothing and prompt him to pull up his pants.
7. Whether your child eliminated or not, it’s always a good idea to practice hand washing!
8. When accidents occur (they will!), change your child quietly, without making eye contact or saying anything. If able to do so, prompt your child to assist in the clean-up (wiping self, throwing away diaper).
9. After several days of success, begin to fade the reinforcers (Example: provide one Skittle after two eliminations, then one Skittle after three eliminations, and so on). You’ll want to make sure you’re not fading too quickly or the skill will not be maintained.
10. During the entire process, make sure to take data! Identifying times of accidents, times of successes, and other issues will help you to adapt your sitting times and procedure. This will create an individualized experience for your child, which is more likely to be successful.
And that’s it! Easy, right? Of course not. Remember, toilet training is a journey. It’s playing the game of Candy Land and constantly being sent back to Mr. Mint, Grandma Nutt, and Lord Licorice. Some players are lucky – they pick color cards each time (sometimes doubles!) and never have to move backward. Others aren’t so lucky and experience the two-steps-forward, one-step-back (or one-step-forward, two-steps-back) game of potty training.
At the end of the day, remember to keep pushing on! While there may be setbacks, independent toileting is a goal for all of us. Support one another and consult a professional when needed. We are always here to help!
Last December, we hosted the annual DSAGT Holiday Party. One of the most special moments of that day was welcoming a brand new family to celebrate the holidays with us. Helena, Derek and Sawyer Eddings joined us at the party and were immediately embraced by our other DSAGT families with open arms.
Helena and Derek are incredibly gifted photographers, and have been capturing stunning images of their journey ever since Sawyer was born in November 2015. They are also talented writers, and the combination of their photographing and writing abilities has led them to launch a blog where they can not only chronicle their stories and memories, but also share them with others. Their first posts were revealed on a great date: 3.21.16, on World Down Syndrome Day. We invite you to follow them as they share "This Whimsical Life" by continuing to visit their BLOG.
(Blog post shared with permission by Helena Eddings.)
March 21, 2016
Special moments in life forever imprint on our hearts.
You know, those moments that forever change you. My moment was the day I gave birth. I knew in that moment that I was alive. Joy, beauty and pain flooded me at the same time.
My husband Derek and I got married on 9.17.11. We enjoyed four years of “dink-ing” it (dual income no kids) while we traveled and created so many memories together. We volunteered, we made new friends and formed new hobbies.
After four years of marriage, our friends and families were eager for us to have a baby. We decided to keep our efforts of trying to get pregnant a secret. I assumed that we would become pregnant instantly but that was not the case. After 8 months of negative results I finally saw two pink lines.
We wanted to wait a while before sharing the news with our family. That idea lasted a whole 24 hours.
My pregnancy was perfect in every way. I was at my best pregnant and I had never felt so strong and confident. I was very in touch with my body, so much in fact, that I knew Sawyer was a healthy boy. Derek and I shared a passion for a holistic approach to my pregnancy. I ate mostly organic foods, incorporated daily workouts into our hectic lives and stayed away from all chemicals. Nothing but the best for MY baby
We are firm believers that pregnancy and birth are beautiful and natural processes, and I trusted my body’s ability to grow life. Therefore, we decided to opt out of all testing and ultrasounds.
At 2:30 am on November 23rd, my water broke. We both jumped out of bed and celebrated. Today was the day we had been preparing for. I had dreamt about this day not only my entire pregnancy, but my whole life. I was going to be a MOM!
Instead of rushing to the hospital, Derek loaded the car and I spent a little while painting my nails and getting “cute.” To this day we joke about our calm demeanor and the nail painting that I felt necessary. After an hour or so it was off to the all natural suite to get this little baby out!
(one last picture before we left for the hospital)
I was not afraid to give birth. I was excited, I was prepared and I was ready.
At 7:59 am, with Derek and my sister-in-law Jackie at my side, I made one final push. With that push, I pulled my new baby to my chest. I looked and screamed “it’s a boy”. I, we, had done it! Our lives would never be the same…
We didn’t invite many people to the hospital. We just wanted to spend time with our little family. The first night in the hospital, I stayed awake and just stared at Sawyer. The light came in through the windows and I could see his sweet little features. Ahh, love is such a strong emotion.
IS THIS BABY PERFECT?
That morning, I started taking pictures with of Sawyer. I noticed his eyes appeared to have a bit of an almond shape. The thought left my mind as quickly as it entered. Later that day I asked Derek if he noticed the same about Sawyer’s eyes. With him being a teacher, I figured he would know what I was hinting about. He just thought that he looked like any other baby and didn’t think twice about my comment.
Soon after a nurse came to take Sawyer for standard newborn tests. When they brought him back to the room we asked how everything went. “He is perfect” she said. I thought that I must be crazy thinking he had something wrong with him. He IS perfect
We were only in the hospital for a little over 24 hours and we were ready to be discharged. I felt great and neither of us enjoyed the feeling of entrapment that a hospital room offered. Derek started taking our bags down to the car when the nurse came in and told us that Sawyer needed to see the pediatrician. The thought came back into my head. “Okay, if there is something “wrong” with him, this would have to be the moment they tell me, right?” But at the same time I thought, “why would they have waited so long to tell us?” I decided we needed to go with Sawyer while the pediatrician examined him.
She looked over his little body and I could see the deep contemplation on her face. She was not looking at Sawyer, she was looking through him. My heart raced and I was preparing myself for life altering news. Mean while, Derek was oblivious and had NO idea. No one in our family suspected anything. No nursing staff or midwives had said a word. The doctor looked at us as said “he looks wonderful, everything sounds and appears healthy but he does have some traits of Downs Syndrome”. I immediately responded aloud “I already knew that.” But in my mind I was saying “ give me my baby, we are running for the woods and leave us alone”.
Neither Derek or I said another word. She went on to describe these traits, but we heard nothing. Frankly, I am not even sure either of us made eye contact or acknowledged that she was in the room. In that moment we felt nothing… Empty…Like our souls left our bodies and we were left with nothing. There we stood; ready to take our “perfect” baby home and they told us that our baby was “broken.’ We did NOT sign up for this.
Why did they wait until we were loading our car to tell us such news?
Did they not know? Was this standard procedure? Clearly this was a mistake. Could it really be? Derek pushed Sawyer back to the room as I trailed behind knowing that life would never be the same. We sat in our room, with Sawyer still in the mobile bassinet and experienced a plethora of emotions. A similar roller coaster one would expect during grief.
We were not provided any information or support from the hospital. It was as if they told us, he is perfect but his blue eyes will turn green. As if the news they gave us was routine news. It was not routine, it was life altering. We were so confused.
Less than an hour later, with no consultation from nurses, doctors or social workers, the three of us walked out of the hospital. Derek carried Sawyer, I walked beside and a nurse followed us down. The elevator ride was silent. The walk was silent. The glow we had expected to have, the glow that all first time parents have exiting the hospital was vacant. Sawyer was fastened in and off we went.
I sat in the front seat next to Derek. Looking back, we do not remember the ride, or even how we made it home. Not going through the toll gates, not hopping on the expressway, or pulling into the driveway… nothing. We sat in silence. I instantly felt guilty. I loved Sawyer but I didn’t want to sit next to him. I wanted to be with Derek. I wanted to hold Derek. I didn’t want to hold Sawyer. Our hearts were broken and we needed a minute to process. What do we tell our friends and family? How will they respond? We got home and walked in the house… again… silence. Derek and I grabbed each other and started crying. We sat down on the bed and said, “From this moment forward, we must be honest with how we are feeling,. The good, bad and ugly thoughts”. We can not hide our feelings. We need each other more than ever. This is our journey and honesty is the only way for us to be what Sawyer needs. We talked about our feelings for what had to have been hours. We talked about what this meant and how we were going to handle it. In that moment I fell even more in love with my husband. He showed strength and love in a time when I needed it more then any moment in my life. How could the most beautiful day in my life also carry such pain? And yet how could this pain turn into stronger love? I ran a marathon and turned around and questioned my own success.
The next 24 hours we mourned the loss of the child we were expecting. We mourned the loss of the dreams we dreamt for Sawyer. Those first 24 hours were painful. There were so many emotions. There were so many questions. We didn’t know where to begin. There was one thing we did know. We knew we had a very special relationship and together we were a powerful team. Instead of feeling sorry for ourselves, we realized that Sawyer needed strong parents and we were made for this. In a moment of immense sadness, this overwhelming feeling of empowerment emerged. This is the moment we started healing.
The day of Sawyer’s birth was beyond magical but the day I learned he had Downs Syndrome was the day I physically saw love and felt it running through my veins. The day we learned we had a special child became the most magical day of our lives. My husband and I created this “perfect” child and we were gifted with a journey we didn’t plan for, but we knew our love would be our strength.
This is our story.
This is where the story of our beautiful son, Sawyer Michael, begins.
Welcome to our official DSAGT blog! As we embarked on the fall season last year, our Board Program Committee recognized the need to ensure that we are sharing information with our families through as many communication means as possible. Sometimes, that means hosting an event or seminar. Other times, updates warrant an email or Facebook post. And there is always the good, old-fashioned newsletter that we plan to mail out to all of the contacts in our database two times in 2016. But, we want to strive for more. This blog will allow us to do just that: customize information just for you, and share it directly - and quickly - with those who most support the Down Syndrome Association of Greater Toledo. We want you to have access to as much information, resources, and personal point-of-view experiences as possible.
We don't want to miss the chance to share a preview of all the exciting programs and events that are in progress for this year! Some highlights include:
Thank you for following us as we continue to work hard to serve you and your family!
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