Congratulations!
Dear New Parents,
Congratulations on the birth of your baby! We are sure that you have many questions, concerns and might wonder: what will the future hold for my child, or maybe even, how can I do this? These feelings are perfectly normal. We’re here to help answer all of your questions and let you know, everything is going to be okay. In addition to DSAGT resources and events, we can also connect you with parents who have been exactly where you are, and can help guide you through the early days, one step at a time.
Get to Know DSAGT
DSAGT provides current and up-to-date information on Down syndrome, as well as emotional support, to parents, families and people with Down syndrome who live in 17 counties throughout Northwest Ohio and six counties in Southern Michigan. We take every opportunity to promote public awareness, acceptance and inclusion of people who have Down syndrome. We have multiple early education programs such as: First Steps Baby Group and Smart Start Kindergarten Prep. Additionally, the association holds social activities such as an egg hunt/spring party, Toledo Walleye and Toledo Mud Hens games, fall outing, holiday party, moms' and dad's nights out and our annual Toledo Buddy Walk. We also provide scholarships to encourage recreational, therapeutic, and/or educational opportunities for those with Down syndrome of all ages! This is just a snapshot of the many services we have to offer.
Congratulations on the birth of your baby! We are sure that you have many questions, concerns and might wonder: what will the future hold for my child, or maybe even, how can I do this? These feelings are perfectly normal. We’re here to help answer all of your questions and let you know, everything is going to be okay. In addition to DSAGT resources and events, we can also connect you with parents who have been exactly where you are, and can help guide you through the early days, one step at a time.
Get to Know DSAGT
DSAGT provides current and up-to-date information on Down syndrome, as well as emotional support, to parents, families and people with Down syndrome who live in 17 counties throughout Northwest Ohio and six counties in Southern Michigan. We take every opportunity to promote public awareness, acceptance and inclusion of people who have Down syndrome. We have multiple early education programs such as: First Steps Baby Group and Smart Start Kindergarten Prep. Additionally, the association holds social activities such as an egg hunt/spring party, Toledo Walleye and Toledo Mud Hens games, fall outing, holiday party, moms' and dad's nights out and our annual Toledo Buddy Walk. We also provide scholarships to encourage recreational, therapeutic, and/or educational opportunities for those with Down syndrome of all ages! This is just a snapshot of the many services we have to offer.
What is Down Syndrome?Down syndrome is the most commonly occurring chromosomal abnormality. In the United States there are approximately 350,000 individuals living with Down syndrome. These individuals are active, vital members of their families and communities. A life with Down syndrome is a life well worth living. There are three types of Down syndrome:
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Trisomy 21 The most common type of Down syndrome, occurs when there are three, rather than two, number 21 chromosomes present in every cell of the body. Instead of the usual 46 chromosomes, a person with Down syndrome has 47. Trisomy 21 accounts for 95% of cases. |
Translocation In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome. This accounts for 4% of all cases of Down syndrome. |
Mosaic Mosaicism occurs when nondisjunction of chromosome 21 takes place in one – but not all – of the initial cell divisions after fertilization.When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Mosaicism accounts for about 1% of all cases of Down syndrome. |
One additional thing to note, parents do not cause Down syndrome; nothing you did or did not do before or during pregnancy caused your baby to have Down syndrome. Down syndrome occurs 1 in every 733 births, which is approximately 6,000 births per year in the United States. Down syndrome occurs in all races, ethnic groups, socio-economic classes and nationalities. It truly can happen to anyone, although women over the age of 35 do have a higher risk of having babies with Down syndrome.
You just received a Down syndrome diagnosis....Where do you go from here?
1. Get to know your new babySpend your first few weeks getting settled in at home and falling in love with your new baby. |
2. Connect with the Down Syndrome Association of Greater ToledoGetting connected with the DSAGT is a great place to start. We can answer your questions, connect you with a DSAGT parent mentor, and welcome you with a new baby basket. Call us at 567-742-4004 or email us a information@dsagt.org |
3. Make an appointment at the Down Syndrome ClinicThe Down Syndrome Clinic is now offered through ProMedica Toledo Children's Hospital Pediatric Specialty Clinic. Dr. Eileen Quinn, an esteemed member of DSAGT and a Developmental and Behavioral Pediatrician will be providing care to individuals with Down syndrome from birth to 21 years. Appointments are available on Wednesday afternoons and can be scheduled by calling (419) 291-5599. |
4. Contact your county Board of Developmental Disabilities (Board of DD)By connecting with your local county Board of DD, you'll be able to be connected with early intervention services for your child .
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5. Connect with the Down Syndrome CommunityJoin the DSAGT closed page for parents on Facebook to connect with local families. Also consider joining a Mom or Dad's night out, which are hosted once a month. To connect with additional resources consider getting connected to the Down Syndrome Diagnosis Network. |
Welcome to Holland
By Emily Perl Kingsley, 1987
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience understand it, and to imagine how it would feel. It’s like this......
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. You must learn a whole new language. You will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. For the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss.
But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. You must learn a whole new language. You will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. For the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss.
But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Parent Stories
Our parents have been in your shoes and have felt similar feelings to those you are experiencing now. They share in our congratulations on the birth of your baby, and want you to know there is a bright future ahead for your family!
I cried whenever I caught a glimpse of my belly in the mirror and my husband got great in giving hugs. We spent hour searching the internet trying to sort through the endless possibilities of medical conditions and studying the faces of kids with Down syndrome to imagine what our sons face will be like. And then came the dream. It was vivid and clear. I was holding an old book. It had a film of stains and dust on the cover and I couldn't make out a title. The binding was half torn and bits of paper were peeling off the corners. When I opened it, the yellow pages were showing their age and there were some missing as well, but it was worth the reading anyways I thought. As a kid, I remember reading anything I could put my hands on as long as I loved the story. That was that kind of book. I didn't want to miss out on a great story. Sure, it has conflict and tears but it also has comedy and love. Most of all, it is ours.
Magda Kadlitz
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When we learned of Annie's diagnosis before she was born, I saw her as the world might "see" her. I saw a child who would look a little different and who would have physical and mental delays. I insisted to God that I could not handle this. But then we met her, and instantly I saw her as I should; as her mother. She was, she is, beautiful. Those almond-shaped eyes that I imagined would set her apart? Well they do, but in a wonderful way. They are my favorite feature on her! I could stare into those eyes all day, because I believe her eyes lead right into her soul; a soul so pure, and so lovely, and so untouched by the very "world" that I, her own mother, have fallen prey to.
Before Annie was born, Matt and I talked about how/if we would tell our kids about her having Down syndrome (our oldest was 10). They knew about her heart condition, and we prayed for her as a family, but we hadn't told them about DS. I didn't want to instill in them those very same preconceived ideas that had already gripped me. I learned a great lesson the first time they visited with their sister. There was such pure love and happiness! Not one of them seemed to notice any "differences" about her. They don't see her slanted eyes or feel her low muscle tone...they just see Annie. She is one of the gang!
Maggie Viertlbeck |