I Am the Child

I first read this poem at St Joseph's Children's Hospital in Marshfield, WI while James was an inpatient there. I love this poem and feel that so many parts are what my gorgeous little boy would say.


I AM THE CHILD
(Author Unknown)
I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.
I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

How Mother's of Handicapped Children are Chosen

I've read this several times, but thought I'd share it here.


How Mothers of Handicapped Children are Chosen

Erma Bombeck, 1980
This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.“Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia.
Finally he passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter?”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.”
God smiles, “No matter. I can fix that. This one is perfect.She has just enough selfishness.”
The angel gasps, “Selfishness?
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word. She will never consider a ’step’ ordinary. When her child says ‘Mama’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life.”
“And what about her patron saint?” asks the angel.God smiles. “A mirror will suffice.”

It's That Time of Year

Fall is one of my favorite times of year. I love the colors most I think. I love the oranges and browns and reds. For some reason it calms me. And thank goodness for that, because the season of fall brings with it the worry of kids getting sick, especially flu season.

In my household, we all get a flu shot (well my husband doesn't always...men...). I'm a big believer in vaccines, especially for our little James. He's already been battling allergies/cold for the past month. I've had to keep him hom from school a few days and we've been going through Allbuterol nebulizers like they're water! I luckily always get a flu vaccine at work and will be soon taking the boys into the pediatrician for theirs and hopefully will talk my husband into it too.

Here are some facts that I got from the CDC at http://www.cdc.gov/flu/protect/keyfacts.htm

There are two types of vaccines:

The “flu shot” — an inactivated vaccine (containing killed virus) that is given with a needle, usually in the arm. The flu shot is approved for use in people older than 6 months, including healthy people and people with chronic medical conditions.There are three different flu shots available:
a regular flu shot approved for people ages 6 months and older
a high-dose flu shot approved for people 65 and older, and
an intradermal flu shot approved for people 18 to 64 years of age.

The nasal-spray flu vaccine — a vaccine made with live, weakened flu viruses that is given as a nasal spray (sometimes called LAIV for “Live Attenuated Influenza Vaccine”). The viruses in the nasal spray vaccine do not cause the flu. LAIV is approved for use in healthy* people 2 through 49 years of age who are not pregnant.

Seasonal flu vaccines protect against the three influenza viruses that research indicates will be most common during the upcoming season. The viruses in the vaccine can change each year based on international surveillance and scientists’ estimations about which types and strains of viruses will circulate in a given year. About 2 weeks after vaccination, antibodies that provide protection against the influenza viruses in the vaccine develop in the body. Information specific to the 2011-2012 season, including the vaccine formulation, can be found at 2011-2012 Flu Season.

When to Get Vaccinated

CDC recommends that people get their seasonal flu vaccine as soon as vaccine becomes available in their community. Vaccination before December is best since this timing ensures that protective antibodies are in place before flu activity is typically at its highest. CDC continues to encourage people to get vaccinated throughout the flu season, which can begin as early as October and last as late as May. Over the course of the flu season, many different influenza viruses can circulate at different times and in different places. As long as flu viruses are still spreading in the community, vaccination can provide protective benefit

How effective is the flu vaccine?

Inactivated influenza vaccine effectiveness (VE) can vary from year to year and among different age and risk groups. In general, the highest VE is among young healthy adults and older children. Lower VE is reported for young children (e.g., those younger than 2 years of age), and older adults with only one randomized trial conducted in adults 60 years and older. VE also depends on the degree to which influenza vaccine viruses are well matched to circulating influenza viruses. Lower VE is expected in years when the match between circulating and vaccine viruses are suboptimal. VE also varies based on the outcome used, with generally the lowest VE estimates using non-influenza specific non-laboratory confirmed outcomes. The use of antibody seroconversion as a sole measure of VE may result in an overestimation of VE compared to other laboratory outcomes including viral culture and RT-PCR. CDC is currently reviewing recently published studies on VE to update existing estimates.
In healthy adults younger than 65 years of age, the flu vaccine can also prevent lost work days, and keep you from having to see the doctor or using unnecessary antibiotics.

How effective is the flu vaccine in children?

Because children younger than 5 years of age are at increased risk of severe flu illnesses, children 6-59 months and the household contacts and caregivers of children 0-59 months are recommended to get the flu vaccine every year. Children younger than 6 months of age are most at risk for having complications from the flu. However, they are too young to get the flu vaccine. To protect these infants, it is very important that their household members and out-of-home caregivers be vaccinated against the flu.
The flu vaccine can prevent 66% or more influenza infections in young children, with even higher estimates for older children, when the vaccine strains are well-matched to the flu viruses causing illness. Vaccinating close contacts of children can also help decrease children’s risk of getting the flu.
All children 6 months through 8 years of age are recommended to receive 2 doses of 2010-11 flu vaccine 4 or more weeks apart unless they have received:
at least 1 dose of 2009 H1N1 vaccine last flu season, and
at least 1 dose of seasonal vaccine prior to the 2009-2010 flu season or 2 doses of 2009-10 seasonal flu vaccine last flu season If a child has fulfilled both requirements, they only need 1 dose of the 2010-11 flu vaccine.
Studies have shown that two doses are needed in children younger than 9 the first year they are vaccinated in order to maximize the protective benefit from vaccination. Once you get vaccinated, your body makes protective antibodies in about two weeks. However, children younger than 9 years old who are being vaccinated for the first time need a second dose 4 or more weeks later in order to be protected.

Stationery card

Little Goblins Halloween Card

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Reading

If you've followed James' caringbridge site you'll know that he loves to read books. When we read to James we can't just read one book, we usually have to read about 10 books-no exaggeration! We were recently told about a program that is supported by Cass and Clay Counties United Way called Imagination Library. It was started by Dolly Parton and what they do is send your child an age appropriate book to your child for free every month until they turn 5! How amazing is that! All you have to do is google Dolly Parton's Imagination Library and sign up! If you're not sure your county supports this program-no problem. Simply go to the website and and choose your zip code and they'll tell you if your county participates!

Another recent development that is great for James and his reading is that he now has library class every week at school! He will bring home one book each week! They help him to pick an appropriate book that he can learn from and enjoy!

Reading is one the best things we can do for our children. We've never had a problem with reading to James but we've found with Elliot (our almost 2 year old) is that he just doesn't sit still long enough to read him a book! However as he's gotten older we've noticed that he'll just take some time himself to sit down and at least look at books. Some days it's for 5 seconds and some days he'll sit and look at every book we own! One thing I've tried to do for our boys is to set aside a specific time (right before naptime for us) and we read for 20 minutes. I sit with James in the rocking chair and read to him (about 4-5 books) and turn off the tv and any other distractions. Usually Elliot will follow suit and pull out several books and look at them and every once in a while venture over to James and I to check out the book we're reading. If you have any other ideas for getting more reading time in with your kids, please share!

Happy Reading!

It's that time of year

The cold season is going full force at our house. James got his first cold this week and it started off pretty bad. After school on Friday he was breathing pretty hard and was much worse after his nap. Luckily we've been able to get it under control with frequent nebulizers and nose-sucking and snuggling. I'm nervous for this winter for James. He's been quite well since last January when he had his fundoplication surgery to help with his reflux. However, at the same time we switched the boys to a small in home daycare and since we moved to Fargo we've had a nanny coming into our home. Now with James being in school I'm sure he'll be exposed to more illnesses and such. Hopefully we'll be able to avoid any major instances of respiratory distress. We'll definately be be staying on top of things with hime by giving him frequent nebulizer treatments, along with 2 other asthma medications but in addition we'll be sure to be washing our hands often, avoiding people who are smoking, and possibly trying to keep the kids out of stores with lots of people.

First Day of School!

James went off to his first day of pre-school with no tears! He was soo excited! I worried because when he went to summer school he cried almost every day. I think that it helped that the week before school started we were able to go to Back to School night. It was great to meet his teachers and therapists and share with them what we do at home and at outpatient therapy as well as our goals and things that comfort him. James rides the bus to and from school 4 days a week. And on his day off from school he goes to outpatient therapy. Makes for one busy little boy. As I explained to James that morning that he was going to school and would see his friends and teacher and get to play, he had a big bright smile on his face. He got excited every time he saw a bus drive by our street. About 2 or 3 went past before his came. I must say I was very proud of my little boy. From what I hear, James does well at school and loves to be there. He's good on the bus too and never makes a peep. Just likes to go for his ride and look outside at everything. We've been seeing some progressing in James in the past few weeks. He's holding his head much better when on his tummy and tries to roll over more. He's in love with little things he can get his hands on right now, including matchbox cars, stickers, and little action figures. He gets quite upset when he loses them. I'm super excited because I came across a company recently that makes adaptive toys and such for kids like James. I ordered a catalog and can't wait to get him some of the stuff! I say some, because a lot of it is very expensive and large. While we'd love to get James an adaptive swing, it's not very practical while we live in an apartment. James of course got Labor Day off from school, but will be right back at it Tuesday morning!