Friday, July 31, 2009

Seven Things I Love

Ok, ds.mama was tagged by rickismom to write about seven things I love. I confess, I usually complete these sorts of assignments in comment boxes rather than posts but this time is different because there is something on my list you need to know about.

1. You. That’s right friend, you. I am so happy to be a part of a community of people who share their hearts, their hurts and their triumphs. A group who advocates, educates, and cultivates. A community that welcomes newcomers with open arms and goes faithfully to visit the blogs of newborns, or those who are ill. I love all you ds.mamas and ds.papas for what you do and I am proud of you.

2. The French language. Pierre can whisper in my ear all day and night ;-)

3. My babies.

4. Their father.

5. A really powerful summer thunderstorm at dusk.

6. God.

7. Eating gourmet food that I didn’t have to cook.

Your Turn
Tell us what you love.

Thursday, July 30, 2009

Baby Boy Bounty

Big brothers J and Red are happy to tell you that there is a new little brother at their house. Be sure to make your way over to their mom's blog to see him and wish them all well.

If you would like our community to know about the arrival of a child with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Wednesday, July 29, 2009

It's Raining Boys

Brady and Madi proudly announce the birth of their son, Kelvin Kyler Love. What a perfect last name for this sweetie. Stop in and give this new little guy a virtual hug.

If you would like our community to know about the arrival of a child with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Tuesday, July 28, 2009

Birth Announcement

The Stevenson family is proud to announce the birth of their first child, Beau Thomas. Beau was born via c-section at 29 weeks. He is currently in the NICU but doing great and shooting for an early August parole. Stop by their blog to check out this cutie and give them a warm welcome.

Thank you Rebecca for the sweet announcement graphic. If you would like our community to know about the arrival of a new baby with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Saturday, July 25, 2009

Only One Week Left

There is just one more week left in July... one week left to enter DSNM’s summer giveaway. Why don’t you take a minute right now to tell a wondering mom-to-be what having a child with Down syndrome is really like.

Tuesday, July 21, 2009

First Library Additions

I love books. I spend a lot of time in the bookstore and at Amazon. My kids love books too and my baby with Down syndrome is no exception. Right in the beginning I realized that I needed to be more intentional with my book purchases for her. Suddenly I could see how overwhelming the pictures were, how senseless the content was, how difficult to manage the tiny pop up windows were...

When infants can’t understand the words yet and have no schema for the pictures, any old book will not do. Here are some ideas of what to look for in a good baby book:

--A single image on a page without other distracting imagery. Pictures with high contrast, particularly black and whites, are the best.
--Pictures of baby faces, recognizable body parts, or objects/actions common to a baby’s day. Books that show babies doing things.
--Books that isolate colors, that have textures to touch, or that teach concepts like object permanence.
--Books with good cadence content (songs or rhythmic language) and books with word repetition.

Lots of times a book will meet one or more of those qualifications but have too much detracting from it...too many images on a page, blended colors, and things you don’t want to show your baby (like lots of unhealthy treat foods).

The following books make good first reads (and second, third, fourth, etc., because you know you’re gonna end up reading those same favorites over and over and over.)

Recommendations for Stage 1 Books

Brown Bear—Eric Carle 7.95  One bright picture per page (until the end) and simple repetitive language. I read this book out-of-synch so that when I am saying “I see the animal and its color” I am on the page with that animal. I think this is less confusing for a new baby.

Today is Monday—Eric Carle 6.99  Wonderful high contrast colored pictures and repetitive language. Babies love to stare at the pages in this book.

Peek-a-who—Nina Laden 6.95  High color contrast pictures, simple rhyming language, and object-permanence teaching peek-a-boo pages. Check out Ria’s in-depth review of this book.

baby! talk!—Penny Gentieu 1.29 (used)  This is one of my all time favorites. Its full of babies doing baby stuff like playing “So big”, “Peek-a-boo”, and “Patty-cake”. Each left page has a single baby doing something and each right page has a group of babies doing it. There are lots of talking points (Look at that baby drink her bottle) and lots of baby games to do. It is out of print but buy it used or borrow it from the library, its worth it.

Moo Ba La La La—Sandra Boynton 5.99  Classic Boynton when she was great. I gave our copy away in PICU one day and ended up replacing it with the super-sized version. It is just a fun, rhyming book that babies seem to really enjoy.

Rainbow Colors Peekaboo—DK Publishing 6.99  This is a great book that has simple pictures, isolated colors, textures for touching, and fold-out pages for teaching peek-a-boo. It is part of a peekaboo series and not all of these books by DK meet the qualifications of a good baby book. Another good one is Farm Peekaboo.

Hush Little Baby—Marla Frazee 7.00  My favorite lullaby. The pictures aren’t great for a baby but the words are the originals. It makes a nice bedtime song.

Look at Baby’s House—Peter Linenthal 6.99  Black and white delight! This book is only black and white and has simple content about a baby’s day. Babies are captivated by the pictures.

I Can, Can You?—Marjorie W. Pitzer 8.76  This book has pictures of young children with Down syndrome doing everyday activities. It is a little “old” for a newborn but it is important for your baby to see children in books who resemble her.

Little Angel—Sandra Magsamen 7.99  A baby should hear this (poem) story everyday. It is a beautiful message about being wanted and loved. (Heck somebody please read this to me at bedtime!) The pictures are just ok, the finger puppet is cute, but it's the words that make this a must have book.

(Not pictured) Baby Talk—DK Publishing 4.99  A simple book of babies doing everyday things like eating or sleeping. Each left page has a single picture of a baby and each right is a colored fold out that hides the same baby doing what the words say on the fold out. It teaches object permanence (can’t get enough of that) and feelings.

Your Turn
What was your baby’s favorite first story? Got a baby book review for us?

Friday, July 17, 2009

Finger Foods

Letting your baby feed himself finger foods is a great way to give him a chance to practice fine motor hand dexterity as well as tongue and jaw control. But what serves as a good choice of finger foods to offer your baby? Below is my list of favorites that meet basic early foods guidelines.

My 10 Favorite Finger Foods
Puffs or Cheerios (I prefer Happy Baby Puffs and Cascadian Farms Os)
Scrambled eggs (yolks at six months, whole eggs at one year)
Steamed broccoli or cauliflower
Small chunks of muffin or breakfast bread, such as banana bread
Well-cooked pasta pieces
Pancake chunks (no butter or syrup)
Red beans and rice (spice it up for high-flavor)
Chopped up Egg Mini-Balls (from Super Baby Food by Ruth Yaron, whole eggs at one year)
Chunks of soft-breaded fish sticks (fish at one year)
Small chunks of cheese quesadillas (cheese at nine months)

When it comes to food, I am a proponent of starting ealier rather than later when food habits and expectations have begun to take hold. You, your pediatrician and perhaps speech or OT will have to determine when your baby is ready to self-feed. However, this will probably happen when your baby can sit well-supported in a feeding seat with a tray and is ready to move on to the munching phase (beginning to mash food in his mouth by flattening and spreading his tongue while moving his jaw up and down. The DS Nutrition Handbook, pg. 10). Your baby does not need to have teeth to enjoy finger foods. If you notice that your baby shows interest in what you are eating (watches you eat, leans toward you as you eat, sticks his tongue out as you eat), he is probably ready to try self-feeding.

Finger Food Guidelines
Food pieces should be about the size of a Cheerio or large pea. The food should be able to be broken down easily by saliva and gumming. Only place a couple pieces of food at a time on the tray to avoid overstuffing (which can lead to choking.) It is a good idea to use a plastic bib with a pocket to catch the misses so that you can dig them out and give your little one a second chance with them.

Feeding No Nos... Never leave your baby unattended while he is self-feeding. Try to avoid foods that are wet with straight edges (for example, steamed carrot chunks or chopped banana) as they will stick to the tray setting your little one up for frustration. Skip the choking hazards... hot dogs, peanuts, popcorn, chips, seeds, whole grapes, whole olives, corn niblets, cherries, and peanut butter.

If your baby begins to choke, do not try to dig the food out of his mouth. This can cause it to be jammed further in his throat. Pick him up and turn him over with his head lower than his torso. Give him a firm thwack with your palm on his back right between his shoulder blades to expel the food. If you cannot dislodge the food right away, call 911 for help.

Red Beans and Rice
4-5 Cups Cooked Rice
Olive Oil, Salt, Pepper
1 Small Onion, chopped and browned
2 Garlic Cloves
2-3 Tablespoons Bearitos Chili Spice
1 Can Pinto Beans, drained
In a large skillet, brown chopped onion in olive oil on medium heat. Add garlic and cook two minutes longer. Add beans, chili spice, and salt and pepper to taste. When heated through, add the cooked rice and mix well. Splash with a dash of olive oil. This can be served with shredded cheddar on top. Cool and put a scoop on baby’s tray.

Cheese Quesadillas
2 Flour Tortillas
1/3 Shredded Cheddar Cheese
Place tortilla on a greased baking sheet. Top with cheese and remaining tortilla. Broil 4 in. from the heat for 3 minutes on each side or until golden brown. Cool and cut into tiny pieces for baby.

Egg Mini-Balls
3 hard-boiled eggs, mashed
1/2 cup cooked brown rice
4 tablespoons mayonnaise
1 teaspoon finely diced onion
1/2 cup crushed cornflakes
Mix first 4 ingredients and shape into mini-balls. Roll in cornflakes to coat. Bake in preheated 425 degree oven on greased cookie sheet for 10-15 minutes until browned. Cool and chop up into chunks for baby.

Your Turn
What was your baby’s favorite finger food? Does your baby like self-feeding?

Thursday, July 16, 2009

There's a New Prince in Town

Make sure you go check out a new little man on his momma's new blog, The Wonder of Wysdom. Wysdom has already proven to be quite the fighter having undergone OHS in May. His mom is studying to be a Holistic Nutritionist and I look forward to the information she will sharing with us all.

Sunday, July 12, 2009

For David and His Disciples

I am a parent who chose to bring a child with Down syndrome into our family and into the world you and I share. I have read through your posts and comment threads and several like them and would like to respond to some of the ideas therein.

Technology and tests do not prevent Down syndrome. Ds happens at conception and at some point later, a test result shatters a woman’s heart. Why some women continue their pregnancies and carry their babies to term may be incomprehensible to you, but it isn’t to me.

I did not have my children in order to have my own intelligence and beauty reflected back at me. I do not plan to live vicariously through my children, nor do I need them to support me in my old age. I am not afraid of developmental delays, or of someone whose beauty is different than what our culture is programmed to desire. I don’t suffer from M√ľnchausen syndrome, I don’t feel self-important, nor am I a religious masochist.

I chose to have children so that I could enjoy their company. All three of my children are a pleasure to be with, so they have all fulfilled my “parental needs.”

I am sorry if it bothers you that I didn’t see fit to kill my baby once I learned that the cells making up those little feet kicking at my insides all had an extra 21st chromosome.

I am also sorry if you are angry that some of your tax dollars are spent on giving my child with Ds the extra boost she needs to develop to her full potential (which is way higher than Rob seems to understand) There are lots of things I don’t like my tax dollars spent on either, but I accept that. I can give up a few Mocha Lattes to feed some 16 year old high-school drop-out’s perfectly developed welfare baby. Because, well you know, some unplanned pregnancies do result in live births.

My daughter with Down syndrome doesn’t suffer at all. And the only upcoming suffering she will probably face in her life is the ridicule and rejection of people like you. Might she get sick at some point? Yes, and you might too.

David, before you continue your campaign against parents letting their developmentally delayed children live, you should spend some time learning more about them. You seem to be convinced that only a specific set of “desirable” human traits can result in a “healthy, successful, productive” life. Having Down syndrome and being developmentally delayed doesn’t make you unhealthy, unsuccessful, or unproductive. Are some people with Ds unhealthy? Yes, they are. Are lots of people without Ds unhealthy, unsuccessful, and unproductive? Yes, they are.

Read this book, Common Threads: Celebrating Life with Down Syndrome, and see if knowledge about real people with Ds (lots of adults) doesn’t soften your stance just a bit.

Thursday, July 9, 2009

E plus I times X equals GUILT

Early Intervention therapists come to our homes weekly, bi-weekly, or even just monthly. They train our babies to develop their gross, fine, oral motor, and cognitive skills by conditioning their brains to learn movement patterns, sensations, and organization. They also teach us how to perform these specialized therapy activities and recommend that we do them on a consistent basis.

Daily... I am supposed to do oral motor stimulation prior to each meal and to fit in a 20 minute physical therapy session. I am also supposed to expose my child to classical music and signing throughout the day. Weekly... I am supposed to carry over what we do in pool therapy and to practice several activities suggested by a special education therapist and a teacher of the visually impaired.

I admit, I am already overwhelmed with multiple children, a job, a husband, a couple of blogs, a house to keep up, two moms groups, church... etc. And, some days, ok, maybe lots of days, I could easily not do any of the recommended EI activities. When this happens, guilt sets in and I envision my daughter never becoming independent because I didn’t find time to roll her around on a mat everyday. Oh, yes, I beat myself up for being an EI slacker mom.

Once the guilt takes hold, I start to wonder if EI even matters at all. Wouldn’t it be easier to just free myself of this cruddy feeling by axing EI altogether? What good is a bi-weekly 20-minute splish-splash in a pool anyway? Does it really make a difference if I stick my fingers in my daughter’s mouth for five minutes before lunch? Am I wasting our therapists’ time and our state’s money?

I confessed my shortcomings and fears to our physical therapist. She reiterated that, “It matters. Even if it is sporadic, it makes a difference.” Ok, so it’s worth it but how do we rid ourselves of the guilt and manage to get in more therapy?

Get Some Helpers
Enlist the help of siblings or other family members. A brother or sister as young as five can be taught to tickle a baby’s lips and cheeks with a Nuk brush. Siblings can learn beginning signs such as mom, dad, more, drink, etc. and can use them regularly with the baby. You can make a game of having all your children bombard the baby with specific sound combinations. For example today can be “ga gu, ga gu” day. (Grandparents, cousins, or any other family members work well too :-) And do not feel bad about involving other family members. You would think nothing of having one typical sibling help another with studying for a spelling test or practicing catch.

Call your local high schools to see if there are any responsible teenagers who would like to earn volunteer service by coming to your home once or twice a week to carry out therapy activities with your little one. Check with local colleges to see if there are students in an Early Childhood or Special Education programs who could benefit from the opportunity to volunteer in your home working with your child. You can show the student volunteer exactly what you would like them to do.

Make Routines
Devise ways to fit therapy into your everyday baby doings. Have your child’s therapists create some routine-based activities for you. For example, after each diaper change I have my daughter do two rotation sit-ups (a modified sit-up where she pushes up from her side into a sit position). When I dress her in the mornings and put her jamies on at night, I do a couple minutes of body massage. At lunchtime, I put her in the highchair a few minutes before her lunch is ready. While she waits, she chews on a vibrating teether or plays with her Nuk brush. By the time I get her lunch set up, most of her oral stim work is done already! This is formally called the routine-based early intervention model. Your therapists will know how to implement it into your individualized daily routine.

Have your child’s therapists write down a step by step therapy routine that you can follow for specific skills you are working on. Keep it short and simple. For example, have your PT write up a 15 minute warm up, skill practice, warm down activity list for you to use when you are working on a specific gross motor skill. Having a cue card to help you run through the moves will help you get it done.

Schedule in one or two therapy sessions a week on your calendar for you and your baby. Treating this like a weekly appointment may be what you need to make it happen. Completing a session with your baby even once a week will help you reach your baby’s EI goals and will leave you feeling like you have really accomplished something.

Ditch the Guilt
Feeling guilty about not carrying over early intervention therapies is a good sign that you care deeply about your child’s success and your role in it. So you didn’t do any therapy today... or yesterday. There is nothing you can change about that. Don’t go feeling bad. Remember that those days were filled with smiles, chattering, hugs and kisses, good food, and plenty of goings on for your baby’s edification. Tomorrow is a new day and who knows, you just might find yourself rolling your baby around your livingroom on a big plastic tube!

Guilt That’s Really Grief
I sometimes think that no matter what I do to help my daughter, I might still suffer a tinge of guilt wondering if there was something I missed. This feeling of guilt, brought about by skipping a day of therapy or even avoiding therapy, is really a “chronic sorrow” moment. Chronic sorrow is a normal ongoing part of the grief process. It is the occasional revisiting of grief when reminded that something has been lost. Catching myself slacking on therapy is a trigger that reminds me that life with my little girl is not typical. It is a reminder that things are tougher for her, a reminder that she has a disability. Once I realize this feeling for what it is, I give in to my boo-hoo moment, cry a few tears, and get back on track.

Your Turn
Have you got any ideas on how to integrate EI into everyday life? Got an EI slacker confession you want to make? Got some encouragement for us parents who aren’t sure what we’re doing is making a difference? Please take a minute and share it.

Thursday, July 2, 2009

Summer Giveaway

What would you say to a woman who has just found out she is carrying a baby with Down syndrome and is torn about what to do?

Answer this question by July 31 in the comments section of this post or in a post of your own and you will be entered into the DSNM summer giveaway. During the first week of August, I will post my answer to the question and link to all your posts. I will also list the random winner who will have the choice of either prize pack listed below.

The Child Pack
The child pack consists of a bottle of Nordic Naturals Children’s DHA, strawberry flavored, in liquid or soft gel form (your choice) along with the book, No No Yes Yes by Leslie Patricelli.

The Parent Pack
The parent pack consists of the book, More Than a Mom: Living a Full And Balanced Life When Your Child Has Special Needs by Amy Baskin and Heather Fawcett. (Ok, Dan, I hear you... if it were me I woulda named it More Than a Parent...) and a Lindt Classics Caramel Assortment box of candy. (Can you tell ds.mama likes to read and eat bon bons?)

The real prize is that the words you write may well be read by a mom who needs to hear the truth from a parent who knows what that is.