What a New Mom Needs

When you have a baby, especially your first baby, you really need access to good information. Learning to feed your baby, obsessing over how many dirty diapers a day there are, figuring out which cry means what... we all go through it, and when we need help we have our moms, friends, books, the Internet, and a myriad of other resources. But the one thing we come fully equipped with is expectation. We know what babies look like. We have likely held a few, maybe helped out by babysitting, and we have certainly seen them everywhere.

What about when your baby is born with Down syndrome? Suddenly you realize you don’t know much about it and maybe you can’t even remember ever seeing a baby like yours. You might experience fearfulness and your previously held expectations may no longer apply. What you need is to see other babies, children, teens, adults... people with Down syndrome so that you can know right away that there is nothing to fear about your new love. The International Down Syndrome Coalition has created a video, a compilation of awesomeness that I wish every new mom could see. Get ready for dancing, swimming, four-wheeling, rockin’ out, and a whole lotta beautiful...



Oh and all that other stuff that's good to know? Click around. It's here somewhere :-)

Good Intentions - Planning for the Future - Part 1

There are several parts of planning for your child’s future that I will be covering over the next couple months, ranging from writing your will to buying life insurance. I am going to start with the Letter of Intent because it is free and you can get it done with no professional help.

A letter of intent is a document written for future caregivers that describes your child and the life vision you have for him or her. (Older and adult children can and should help with the life vision but I am writing for the 0-24 month crowd, so you’ll be doing all the planning for now.)

What does this mean? Well, imagine that tomorrow someone else had to step into your shoes and take care of your baby. What routines should they know about, food allergies, preferences, dislikes? What is your bedtime routine? Does your baby love the bath? Is your child on medication? It is important to document these things.

And what about the future you envision? Should your teenager have an allowance? What type of discipline do you want to employ? Do you want to restrict your child from watching rated R movies? Do you want your child raised in a particular faith? Do you want your child to have a particular diet?

After researching several sources on the letter of intent, I have put together a template letter that you can use as the base for your child’s letter of intent. Download the .pdf file and use it as a guide, or email me for a text version of the file that will enable you to type into the document.

Keep in mind when you are writing the letter that you will be updating it every six months or so to keep it current. You’ll need to keep a completed copy of the letter with your important papers, as well as a working copy on your desk or computer.

It is hard to think about what life would be like for our children without us. However, if we don’t go through this exercise, we risk our children not benefitting from all the loving care we have planned for them in our hearts.

Your Turn
Is there something I forgot to put in the letter? Have you already written your letter of intent?

She’s Gonna Be A Rockstar

Ok, or maybe she'll be a chunky thigh model.

It is natural to wonder what our children will become when they grow up. We nurture them. We provide them with early intervention. We send them to school (or educate them at home.) We teach and train them. We love and adore them. We like to imagine the possibilities. We hope for the best.

And, cough it up moms, we worry for them. I can’t tell you not to, but we both know it doesn’t do us any good. Our children will be fine. Our children will be artists, companions, public speakers, photographers, actors, mailroom clerks, musicians, cashiers, etcetera, etcetera, etcetera.

To give you a glimpse of the future, I’d like to highlight some talented people who are already grown up.

Michael Jurogue Johnson—Artist
Michael is a painter and illustrator. He works with watercolors, acrylics, and oils. Michael’s work is both expressive and lovely. On his website you can purchase original paintings, posters, note cards, or even commission a painting of your child inspired from a photo you provide. If you haven’t seen Michael’s work before, go visit his site. You will be impressed.

Karen Gaffney—Public Speaker, Advocate, Foundation President
Karen’s website describes her as dedicated to championing the journey to full inclusion for people with Down Syndrome and other disabilities. Karen will be speaking at this year’s National Down Syndrome Congress Convention as well as presenting at the World Down Syndrome Congress in Dublin, Ireland. She is also an olympic swimmer and has completed a relay swim across the English Channel. Wow.

Sujeet Desai—Musician
Sujeet is a musician (accomplished with six different instruments) who performs solo across the United States and the world. He is the winner of eight national and international awards. He will be appearing at this year’s World Down Syndrome Congress in Dublin, Ireland. He is one busy guy playing his music weekly throughout his local community, working in a library, practicing martial arts, and hanging out with his wife, Carrie (who is also a public speaker.)

I chose to give some detail about these three in particular because they are masters of skills I will never possess. I am “typical” but I will never be able to paint like Michael, swim (or open my mouth in public) like Karen, or play music like Sujeet. These are gifted individuals.

And you know what? Your child with Down syndrome is also gifted. Your role is to provide opportunity, to make room for that gift to grow. Someday your little Bob the Builder (ok, in this instance it's Brian the Builder) is going to grow up and contribute to the world around him in ways you can’t even guess today.


All photos used with permission.