Expectant & New Parents

Advice for New Parents

The Down Syndrome Test Prenatal Testing Pamphlet  fulfills an unmet need for pregnant women and famlies, pamphlet highlights new blood tests are for high-risk pregnancies.  How the pamphlet was created, future updates and distributation.The purpose of the Down Syndrome Prenatal Testing Pamphlet is to provide current, accurate, and free information about Down syndrome to pregnant women. The pamphlet is available in English and Spanish, and in both print and electronic formats. The English and Spanish pamphlets can be viewed or downloaded on this website.The Global Down Syndrome Foundation and the National Down Syndrome Congress believe this jointly created and distributed pamphlet will fulfill a critical need for pregnant women and families.

Brighter Tomorrows provides families with balanced information about receiving a prenatal or postnatal diagnosis of Down syndrome. In English and Spanish.

Recommended Books

  • Down Syndrome Parenting 101 by Natalie Hale
  • Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper.
  • Common Threads: Celebrating Life with Down Syndrome by Cynthia Kidder and Brian Skotko.

A Promising Future Together A Guide for New and Expecant Parents A Guide for New and Expectant Parents The National Down Syndrome Society’s “  guide is written specifically for new and expectant parents.

New-parent-resources Early Intervention Resources

What-Parents-Wish They had Known  This booklet is a collection of thoughts from parents of children with Down syndrome, who responded to this question: What do you know now that you wish you’d known from the start?

Division of Developmental Disabilities Our services and supports help eligible individuals with developmental disabilities achieve self-sufficiency and independence. The Division likewise offers supports for family members and other caregivers. We believe that you can
best be supported in integrated community settings and the majority of the
Division’s programs and services are tailored to meet individual needs at home
and other community settings.

New and Expectant Parents Congratulations on the birth, or expected birth, of your baby!  We understand that your beby may have Down syndrome.  You probably have many questions, concerns and fears right now. That’s okay.

Social Security SSI Benefits for children with disabilities

AAP-Guidelines Health Supervision for Children With Down Syndrome

Growth Charts For Children with Down syndrome

Earyl Intervention Services Easter Seals Blake Foundation  Arizona Early Intervention Program: We have been providing Arizona Early Intervention Program (AzEIP) services for infants and toddlers with special needs for more than 25 years. Services are provided throughout Cochise, Pima, Pinal, Gila, Graham, Greenlee, and Santa Cruz counties. Our multi-disciplinary teams provide families with information, coaching, and referrals related to enhancing their child’s development within the context of natural routines and activities.

New Parent Network Founded in 1988, New Parents Network’s mission is to help children worldwide by reaching families with parenting information through the creative use of technology.

Diagnosis to Delivery:  A Pregnant Mother’s Guide to Down Syndrome  If you find this book informative, please consider donating $10.00 to Down Syndrome Pregnancy

Sign Word List: Baby Signs Signing Savvy Your Sign Language Resource

The Medicaide Reference Desk  The Medicaid Reference Desk is a tool to help people with intellectual and developmental disabilities find out what Medicaid can offer them

 

My Story About Johan

This is my story about my first two years with my fourth child, Johan. He’s now almost two years old, crawls around, plays with toys and throws food and gets into everything he can get his hands on – all the things you would expect a kid would do. And he has Down Syndrome. I don’t normally lead with this, though it doesn’t take people long to figure out. Usually the biggest surprise is just when people hear his age. At two he’s doing things my other kids did at 9-12 months. But, once I stop thinking about his chronological age, he doesn’t really seem all that different.

But let me go back a bit to when he was born, because the hardest part of the journey, for my wife Kristie and I, was the first day, even though the hardship was completely preventable, and didn’t need to be difficult at all.

When Kristie was pregnant we would notice very small differences between this and other pregnancies. Mostly it was the intermittent nature of his movements. Where our other kids were consistently active, Johan would kick and move, and then just not move at all. We just figured that we had a laid-back child. When we went in for screenings, they saw certain small markers that could indicate potential concerns, but Kristie and I decided that unless it was life-threatening, we would take our baby as God made him.

So one day Kristie went in for a series of “non-stress tests” – a horrible misnomer if ever there was one. Nothing that could test for problems in a late term mother is going to do anything but increase stress. And these tests, like Johan’s motions, would be inconsistent. One day they were good, the next day he would hardly move at all, and they wouldn’t get good readings. Then their anxiety would go up, the tone of voice would get more serious, the nurses and techs would look across the room with that “I think something’s wrong, but I don’t want to say it out loud, because the mother is here, so I’ll just look panicky and stare back and forth and excuse myself really promptly and there’s no way she’ll possibly figure out that we’re getting worried” look. But we could tell, and so, finally, a month before his due date, Johan’s “non-stress” test came out inconclusive, and the nurse sent for the doctor, who immediately called for Kristie to be induced. I figured it was defensive medicine, scared of a lawsuit from another “older” mother (Kristie was 37). But not feeling that we had much choice, we went along with it.

When Johan came out, the room filled with the usual cadre of nurses and techs and people who you haven’t seen until that moment. They took Johan, ran him over to the table with the heating lamp, washed him off and started straight into the tests – pulling on arms, making measurements. I was still standing with Kristie when the nurse practitioner in charge that shift came running over, hands in the air (looking like this was a stick-up, and she was surrendering), and blurts out from six feet away, “You need to know….your son has the stigmata”.

Huh? Stigmata? What in the world….

“Your son has the marks of Down Syndrome.”

“The marks”. What is he, some demon-child? Are you saying he’s Nero Ceasar, who’s imprinting the “marks” on people’s heads as a condition for doing buying and selling (like in the book of Revelation). Is there a 666 on his forehead?

But, then again, you said he had the stigmata. That’s the opposite. That’s the gift of the wounds of Christ that St. Francis of Assisi was given after he tried to become a martyr. Francis wanted to imitate Christ literally, and to die for God was how he felt it had to end. So he went to North Africa, during the crusades, and tried to convert the Sultan to Christianity. It didn’t work. Instead of killing him, the Sultan was very impressed by his faith, and had deep respect for Francis’ humility, his lack of hypocrisy, and how he refused to use violence. So Francis returned to Assisi crushed, feeling denied, and after meditating in a cave, God gave him the “marks” of the crucifixion – the nail holes on his hands and feet, even the wound in his side. But these were a gift, not a curse.

It was all kind of surreal, like one of those moments when everything was so out of wack you look back in memory and wonder if you heard it wrong. But I know I didn’t. That nurse practitioner did not say “markers of Down Syndrome”; she said “marks”. And she definitely said “stigmata”.

To this day I will never know what went through her mind. I suspect it was a case of being overwhelmed and uncomfortable having to break to parents what many would consider bad news. And in those moments when we have to tell people things we don’t want to tell, and be the bad guy with the bad news, our anxiousness in the moment can get the better of us – like the way we say stupid stuff when we ask someone out on a first date. It’s not malicious, just a sign of being emotionally uncomfortable with the subject matter. And I try to give this nurse practitioner the benefit of the doubt – that she was clueless and not prejudiced. But I still try to figure out what was going through her head to connect the wounds of Christ – the stigmata – to a baby with Down Syndrome.

Our Christian faith is very important to my wife and I, as one would suspect from a Lutheran pastor. So that’s the lens through which I see things. Looking back, I wonder if the nurse practitioner was blurting out something deeper and more truthful than even she understood, that this might have been, in a strange way, a God thing.

I remember my feelings very well that moment. It wasn’t anger or defeat at having a baby that would have special needs. It was feeling robbed of that moment to just sit and hold my new baby and just enjoy seeing him and being with him and getting to know him. It was being robbed of having that time of glow, before you have to change diapers or tell him no. It was losing that special time when the world is right, and things are good and the problems of the outside don’t matter. Instead, I was confronted with thoughts of my future life, weird things like worries about retirement, paying for school, which bus would he take? Those concrete concerns that really aren’t urgent at all, but that your mind goes to in times of stress because there’s just too much emotion to handle it all. That’s what filled my head instead of glow and wonder.

Johan and I at the hospital

I wondered a lot of things that day, like what it would be like, how my wife was doing, how my family would react (quite well, it turned out). But, strangely, I finally felt like an adult. Strange that it would take me till 37 to feel that way, but to look at a child with special needs, and realize that you would now be taking a different path in life than you’d thought, and going on a journey you didn’t pack for, and realizing that it isn’t always your plans and wants that are what God wants for your life. It makes you grow up fast. Johan did that for me.

Johan had to go into the NICU in a few hours because, being a month early, he needed help breathing. But this is a typical thing for premature infants. He would end up staying there for a month, as the doctors would meticulously, and inflexibly, demand that Johan meet every one of a whole host of prerequisites before we could take him home. But we finally got him on Thanksgiving Day of that year, 2010.

In retrospect, my wife and I have never regretted not getting the full tests to find out for sure if Johan had Downs before he was born. The reason is that you simply don’t know what to expect, and the books, which are very informative, and of which there are many very good ones, have to tell you every single possible complication. They have to mention every health problem, every heart defect and vision issue and every worst-case scenario. But every child is different, and no one child with Down Syndrome has every issue. But to know all those potential problems can create a ton of stress, taking your mind on that dark trip towards all the worst-case scenarios possible. And what for? You can’t change it. And there’s nothing you can do to prevent it, so there’s no reason to beat yourself up feeling as though you did something wrong, or could have changed it. It is what it is. In your mind all the potential future concerns come to you at one time, but in the real world they’re stretched out, and you can deal with them as they come. Kristie and I still have no idea what we’re going to do for school, and we don’t stress it. Johan will be who he will be, and we will adjust things accordingly. We take it one day at a time.

Johan at a year and a half

Now at the almost two year mark, Johan really has been a joy for our family. We have been fortunate to have avoided a lot of the health issues that many experience. His heart is fine, and his ear infections are minimal. He crawls and climbs and gets around the house now, as any toddler would. In fact, he has been way more easy-going and far less work than our “normal” kids. His older brothers and sister love him to death, and his presence has made everyone a little less edgy, and a lot more nurturing (at least of him; they still fight each other regularly). Our church has embraced him with open arms, and our family has welcomed him as one of us. Reality has not only turned out to not be hard, it’s been better than before he came.

As of right now, I don’t think Johan knows that he has a disability. He isn’t classified into any special groups, and nobody teases him or pushes him to the side or ignores him because he’s different. I’m not so naïve as to think that’s not coming, but I’ll take it as it is for now. The world may be cruel some times, but our family and church need not be.

Being a person who reflects and looks for deeper meanings in life as part of my job, I can’t help but think that having a child with a disability is one of those things that is a gift, a higher calling even. So much of our growing up we think we know what we want, what we like, what our life should be like, and what will make us happy. I don’t think many of us set out with a picture of a child with special needs in our future. But, then again, most of the best experiences in my life have come through things and people that came to me, that I had no control over, and that made me and everyone involved better for it. As hard as it is to admit, I don’t always know what I want, or what is best for me, or what will really make me happiest in the future, and it takes someone coming into the path of my life to show me what more I could experience and do and be. And this is the blessing of a child with Down Syndrome.

Peace,

Lars

 

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