Monday, August 31, 2009

How Do You Do It (with a smile)? Entry 4

The first family I pictured when we learned Reid had autism was the Hooker's. They sat right in front of us (in practically assigned seating) at church every Sunday. At the time, they were the only ones I knew who had a child with a disability.  Not bad role models, as you'll know after you read this guest post from Kristi Hooker.

Twelve years later, after alot of reading, training, and experience, Kristi and her husband John remain primary role models to us of how to joyfully serve your spouse and your family. We've moved back a few pews from our old spot, so their consistent presence, often arms around each other, continues to inspire and convince us that "all things are possible through Christ who strengthens us." (Philippians 4:13)

How do I “do life” with a severely-handicapped child?  Sometimes I do it well, sometimes not…but I always have the assurance that I do not walk this difficult path alone. 

Katie Jo was our firstborn on Thanksgiving Day in 1977, three years into our marriage.  She will be 32 in November.  Our sons are 29 and 27.  Katie Jo (KJ) is severely handicapped with cerebral palsy (from birth), unable to speak (with words), sit or walk.  She has a seizure disorder, a feeding tube and is microcephalic.  Her sleeping for the first 27 years was sporadic at best.  

This probably sounds pretty overwhelming but let me fill you in on what KJ has going for her: Since April of 2005, after being on whey protein for several months, KJ began sleeping through the night.  Now it is rare if she doesn’t sleep through the night!  What a huge blessing this has been!!  Katie Jo also has the best smile (and giggles) in the world (okay, I’m a bit biased!); she has a very sweet nature, taking in everything going on, maintaining eye contact with her bright eyes, responsive to everything around her at (we believe) at least a 6-year-old level.  

God graciously provided a ceiling lift in our home in October of 2001 so we can move our sweet 70 pound bundle from wheelchair to couch to mat on floor to bathtub.  This is just one example of the numerous ways our amazing God has provided for our needs over all of these years.  I cannot imagine doing any of this without God’s help, through various doctors, nurses, family, friends and even sometimes through people we didn’t even know!  Jesus has walked with us every step of the way, whether we always acknowledged that or felt it.  He is always trustworthy…and full of grace.  And He keeps teaching me things about my mothering.  

You see, I didn’t struggle that much with KJ’s cerebral palsy as a mom because it gave me more opportunities to nurture, to care for…but this wasn’t as true for our boys, who have suffered from intense worry and fear, as they were processing things from a child’s perspective.  Wow!  God opened my eyes through a book I was reading, then through Bible study questions in CBS, then through a trusted Christian counselor, who helped me write a letter to our grown sons in which I asked for forgiveness for ignoring or not seeing or discounting their fears in those early years, which led them into such pain as young men.  With the Holy Spirit’s help, we have all experienced a lot of healing, which continues to this day.  God has taught me that “stuffed, unexpressed feelings” do not go away (no matter how strong your faith)…they must be dealt with, which involves work and pain and tears.

As for Katie Jo, she is pure delight!  We believe she is the most spiritual among us.  God has shown us in various ways how He is ministering to her, which gives us such comfort.  Her smiles light up our darkest days!  I often talk with her about the ministry that she has…a ministry of smiles and joy and prayer.  KJ knows that Jesus hears every prayer she voices (inside).  I tell her that Jesus made her beautiful on the outside and on the inside (in her heart).  My husband, John, is amazing with KJ; he is totally involved in her care, which is a huge help to me.

One thing I (we) have learned over the years is to ask for help…and to graciously accept it.  That’s what the Body of Christ is all about…whether helping or being helped, both experience the blessing of God.  If we had not accepted help, I tell people I would probably be sitting in a corner somewhere in tears.  God never intended for us to go it alone; we need each other.

My best lifeline for “doing life with a severely-handicapped child” is being involved in Bible Study on a regular basis.  I have been involved with Bible Study Fellowship (BSF) or Community Bible Study (CBS), both of which involve reading the Bible, answering questions, sharing your answers in a small group and listening to a lecture on the material.  What a lifesaver to have the prayer support of the wonderful women in my group!!  

It is important not to neglect your spouse, either.  It’s good to “play together” as well as to “pray together.”  John and I have found that it is hard to stay mad at each other when we pray together! We are also involved in a small group at church which has been a place to be real, transparent and safe…truly a treasure.

Life is complicated…and more so with KJ’s special needs. I’m not saying it’s easy (at all) but we have found our life to be rich in God’s grace and full of joy amidst the sorrow.

Kristi Hooker           

Monday, August 10, 2009

How Do You Do It (with a smile)? Entry 3

Today's guest post is from my soul sister across the miles, Jeneil Russell.

She sets her sights on a word from the Lord in every single challenge from seizures to allergies to deployments. Then she crafts an eloquent, faith-building illustration in her blog, Rhema's Hope. Her site is a deep mine of treasures including a video about her family, a tribute to her husband's military service, the power in a name, and the utter joy of raising two beautiful daughters.

We got to meet face to face when I flew through Logan last month. I know exactly how Julia Child felt at the train station meeting Avis DeVoto, her inimitable pen pal of 7 years. Have you seen Julie & Julia yet? Go...

When I grow up, I want to be like Jeneil. Add her to your RSS!

How do you do it with a smile?

Well, there is no choice but to do it.

The sleepless nights, the endless hours of speech, OT, and ABA therapy, the doctor appointments, the IEP meetings, the seizures, the tantrums, the medications, the daily care, the special diets, the highs and lows… we do the life of autism every day.

God has fearfully and wonderfully made a beautiful, precious child and entrusted her to me. (That fact alone still amazes me). And she had my heart the moment I knew she was growing inside me. Love for her has always compelled me.

So I do it because I can’t not do it.

But to do it with a smile is something altogether different.

I smile. Because the God who created her loves her more than I ever could. I believe that He has a wonderful purpose and plan for her life. (Jer. 29:11). I believe that this is just a journey and one day she will be healed in total (if not on earth, in heaven) – seizure-free, senses a-righted, she will speak and understand and sing.

I smile. Because God is writing a story that is just too good. I couldn’t have come up with something better if I tried. The way her little mind works, the way she sees the world… it’s great material for smiles and laughter. Like when she thinks the toilet plunger is a large hat, or when she jumps out of the local pool soaking wet and hugs a lounging sunbather, or when she’s overcome with giggles for a reason unknown to us.

I smile. Because this life could have crushed us, but God has sustained us and re-made us. Everyday He speaks to us and teaches us, through a child without words.

The concerns for her future are there, always there. We do not know what tomorrow will bring. But as His perfect plan unfolds, my face cannot help but break into a big, joyful, grateful smile.

Saturday, August 8, 2009

How Do You Do It (with a smile)? Entry 2

Today's guest post is from Lydia who writes Autistic Speaks. She is a brave and articulate young woman who writes honestly about her experience. I gain huge perspective on my son's reality by reading Lydia's blog. Very often, she puts words to the sensory issues for which he seems to only have behavior. Her explanations catch me in my tracks just before I run out of compassion.

Ironically, the tiger on her banner looks just like another one in the Brookfield Zoo. I have a snapshot (somewhere, pre-digital) of Reid at age 3 busting a gut in front of the glass enclosing "Shere Kahn." How do you explain that sense of humor, Lydia?

I have never raised a child with special needs; I have never even
raised a child. I have, however, spent every day of the past 21 years
affected by autism- not in a sibling, a friend, or even a parent- but in
myself. It must take an unending supply of understanding, patience, and
hope to live with and to love a child with special needs. If it weren't for
being understanding, patient, and hopeful, and if those who love me weren't
the same, then autism would get the better of me.

First, I have come to understand what autism means and how it
affects me. I now know that autism is a neurological condition. Thus,
perceptive differences occur at the most basic biological level; autism is
not psychological nor is it something that I have chosen. I have to accept
that the way I learn about the world around me is different. I can not
control whether or not I have autism, however, I can control the smaller
pieces of the puzzle, such as whether I allow my frustration to build or try
to find my words and say, "I feel frustrated."

Second, I am learning to be
patient with my differences. When I go on vacation, my packing list includes sensory toys, a chewy tube, cat pictures, ear plugs, and wrist
weights; all things that most young adults do not even consider in their
daily lives. I want to be "normal," like most 21 year olds; whatever that
entails, because I must admit, I do not know. Whatever it is, I would take
it. But I am trying to learn to be patient and accept myself, autism, ear
plugs, and all.

Finally, I will never give up hope for the future. I don't

expect the future to be, in any way, "autism free," but I hope that I will
continue to learn about autism as my family, friends, and medical
professionals do. I hope that, over time, life becomes easier both for
those with autism and for those who are in any way affected by it. I hope
that, no matter what turns my life takes, autism will never hold my back
from being happy.

The next time you see a family member struggling with a small child,
please put yourself in that parent's place. Others frequently remind me to
be understanding, patient, and hopeful with myself and my own behavior when
it is trying. So, the next time you see a teenager or young adult with
autism acting out while in public, please try to realize how much effort
that person is exerting to hold it together. Try to understand how hard it
is in that moment; try to be patient with the current challenging behavior;
and always be hopeful that the future holds something brighter.

- Lydia

Thursday, August 6, 2009

How Do You Do It (with a smile)? Entry 1

House guests and guest posts go together like ice and coffee this time of year.

My 25 year old niece has been here in San Diego visiting, job hunting, and sleeping on our sofa. She is the most tolerant, patient, and enthusiastic house guest I've ever known with a foodie's appetite for fun! I can't decide who enjoys her more, Allie or me! She is part big sister, part little sister, part best friend, part cousin, and totally game. We are having so much fun, I forgot to blog.

As I confessed to Allie this afternoon, we really must get back into our routine. She blasted back, "what routine!" Between China, Nantucket, Reid's extended school year, and Kat's visit, we can't even recall what "normal" was around here. So, while I try to recreate that, you can read the fabulous Essay contributions I received from readers in answer to the question, "How Do You Do It (with a smile)?

The first was submitted by Casdok, who is a single parent of a 20 year old young man with autism. She keeps two blogs: Mother of Shrek and Faces of Autism to which you can submit your own photos. The result is a lovely and inspiring archive of diversity showcasing talent and beauty.

So how do I do it with a smile?

By loving enough.