...that the thoughts of many hearts may be revealed....

Anyone parenting a child with special needs knows that any trip out of the house is likely to "reveal the thoughts of many" about disability issues. Some people ignore, some stare, some turn away abruptly, while others wave, smile or make a point of saying hi.

Recently a friend came up to me saying, "I've been hoping to run into you for SO long!" She went on to tell me about an alternative medicine doctor she knows who can cure cancer, alzheimers, strokes and acne (well, alright, she didn't specifically mention acne!), and then came the clincher: "And he can cure Down syndrome with nutrition, and within 8 weeks the facial characteristics of Down syndrome would be gone, and Lucy would look completely normal!" It is amazing how well-meaning individuals can be completely gullible and insensitive to the feelings of a parent of a child with a disability.

Another friend once told me about Lucy, "You are lucky to have a perpetual baby in the house." I was speechless, but then completely shocked as she went on, "I'm lucky, too, because I also have a perpetual baby in MY house--my miniature poodle." How a devout Catholic trained as a physical therapist could say such a thing defies belief!

Ultimately these attitudes are the result of ignorance and prejudice. Very often the friendliest strangers who approach me tell me that they have family members with Down syndrome. Then I know we are both in on the "secret" of what a fantastic blessing it is to know and love a person with Down syndrome. Soon after Lucy was born another friend told me her daughter was sorry to hear about Lucy's disability. Joyce told me she corrected her daughter, and told her--"No, actually Betty is the lucky one!" Joyce once belonged to a Legion of Mary group where one of the members was a young woman with Down syndrome who was devoted to Our Lady, made rosaries every week and was completely accepted and cherished by the group. Joyce had first hand experience of the disability world, and therefore celebrated Lucy's birth with genuine joy.

While it's true that Simeon told Our Lady a sword would pierce her soul so that the thoughts of many hearts may be revealed, how much greater was the joy the Child Jesus brought her! Sometimes the thoughts of others cause us pain also, but it is far surpassed by the joy and love our children bring us.

Caught in the act!

I spent part of the weekend reading Journal of a Soul, the autobiography of Bl. John XXIII while curled up on the couch under a blanket. Guess who decided it looked like fun to try as well when I got up to fix lunch?

Pilgrimage to the Basilica of the Immaculate Conception

On the Sunday that would have been the Feast of Our Lady of the Rosary, our family made a pilgrimage to the Basilica. We said 2 rosaries on the drive in, attended Mass, and completed most of 2 rosaries on the way home. Although we like to go as a family once or twice a year, this visit was particularly motivated by reading about Our Lady of America, on Leticia's blog, Cause of our Joy.
Lucy loved seeing all the beautiful altars to Our Lady, and particularly enjoyed the echoing acoustics of the huge church. She throughly enjoyed the snack in the cafeteria after Mass, and pretty much hopped, skipped and jumped her way through the entire pilgrimage, much to the amusement of many lookers on...
Here is a sedate shot on the way home that completely belies the reality of the morning!

Special children.... but not always special angels!

My thoughts on discipline are only from my experience with one child with special needs, Lucy. Down syndrome affects every individual differently, so my thoughts are not meant to be applicable across the board. I just offer what has worked for me thus far, and if you have any tips please share them!

When Lucy was born, one fear I had was that I would not know how to handle her. 20 years of experience raising kids had taught me that life was so much more pleasant when the kids were respectful and obedient, and that such behavior doesn't come automatically! Looking at my sweet little baby with Down syndrome I wondered if she would be able to learn to obey, or if my household would become more and more chaotic...

When Lucy was just 4 months old I attended a Down syndrome congress and met a mother whose daughter was already in her 20's. I asked her how she managed the discipline issue, and she said firmly, "treat your daughter EXACTLY like your other children!" Being new to the Down syndrome world I asked, "But will she understand what I'm telling her?" My new friend said emphatically, "She will understand lots more than you think she does!"

I decided to take her words to heart and have high expectations for Lucy, even as I have modified those expectations when needed. I have learned never to argue with her, but I do use consequences: when you put your toys away, you can go to the park. or, it's time to turn off the TV, or you will have to sit on the timeout chair (I use her age in minutes for timeout). Today I told her if she behaved well in the store she would get a necco wafer when we got in the car. I am trying to teach her to walk beside me without me holding her hand; we are starting small but extending the time bit by bit. It has taken many repetitions and reminders, but over time I see progress and I have hope we are on the right path!

This is what worked for us for potty training. I started training her in earnest when she was only 2 and a half, because I had read that if you wait too long the HABIT itself of soiling must be overcome in addition to the potty training. At first we tried stickers, candy, books, toys, cheering etc, and she became more and more resistant to even going into the bathroom, much less producing anything. I was frustrated, and began to wonder whether she even COULD do it. It occurred to me that the one thing she absolutely loved was watching TV. I announced to the family that no TV could be watched in the house until further notice (unless Lucy was out of the room), and brought a DVD player into the bathroom. If Lucy went potty, I immediately turned on some cartoons. After 5 minutes, off went the dvd player, and I gave her more to drink. Half an hour later I asked if she wanted to watch some cartoons, of course she did, but I told her she had to try and go potty first. She was so motivated to watch cartoons she overcame her resistance and cooperated! After 6 weeks she had the idea pretty well, and I let the TV on at other times in the house. Once it became habitual for her to use the bathroom, no more hassles. Thank God!

I hope these ideas might be of use to someone else, but every family needs to learn from experience what each child is capable of. It does take more patience to train a child with special needs, but it is so rewarding when they learn to be part of the family team, as their limitations allow.

Did you want ketchup with that?

Lucy's speech isn't the clearest, but I can usually understand her since I spend so much time with her. It can be a bit more of a challenge for Daddy, who sees her mainly on weekends.
My husband had Lucy at the commissary Friday, and while waiting in line to check out, Lucy looked up and said, "Hug-ie, Daddy". Daddy reached out and embraced her, and said, "I love you, too, sweetie!".
Once more, Lucy said, "Hug-ie, Daddy!" And as daddy embraced her again he thought to himself, what a wonderful child. What other kid of ours has ever been as sweet as Lucy?
A third time Lucy said, "Hug-ie, Daddy!"
As my husband reached out with a smile to hug her once more, Lucy stopped him and said, "NO, Daddy, I HUN-GIE!"
My husband paused for just a moment and suddenly realized what she had been saying: "Oh, Lucy, you're saying you are HUNGRY! (vigorous nods) What do you want to eat?"
"MacDonalds hamburger fries!" came the clearly understood reply!

"The GREATEST grace....

...God can give someone is to send him a trial he cannot bear with his own powers--and then sustain him with his grace so he may endure to the end and be saved." St. Justin Martyr

Consider how this applies to parenting a child with special needs!

Lucy and Shep

Pets have been a positive addition to our family, and good for Lucy! After carrying Lucy for 9 months, laboring in a pitocin-induced labor, enduring a c-section, spending countless hours struggling to overcome her feeding issues, and every waking moment caring for her, Lucy's first word was NOT "mama", but rather, "cat", spoken as the cat strolled by one morning!

the stages of grief

Dr. Elizabeth Kubler-Ross did pioneering work on the stages of grief that people go through after experiencing loss in their lives. Not everyone will go through every stage, nor do people necessarily go through the stages in order. As time goes on, many people revisit some stage or other of grief, particularly when the loss is felt again (for instance at certain age milestones).

Having a child with special needs forces a person to deal with the grief of losing the so called "normal" child one had hoped to have. I see where I have lived through each of these stages, and where I have gotten stuck at times. Here they are, for you to see if they ring true for you too!

Stage 1: Shock and Denial. At this stage a person is numb with the news. "It can't be happening to me!" or "The baby looks normal to me, I can't see the features of Down syndrome".

Stage 2: Anger. This anger is often not directed to the child, but is vented to teachers, doctors, family members, society and ultimately God. (quite frightening and all consuming; people stuck here are not pleasant to be around. Obviously, there are times when a person has to advocate for their child quite firmly; I'm talking about something farther reaching and unreasonable)

Stage 3: Bargaining. If I give my child this, this or this experimental medicine, or do thus, thus or thus intensive treatment or therapy my child with be potty trained and reading by 2 and a half! (this can be very expensive and takes a huge toll of time and effort, guilt often plays a roll.)

Stage 4: Depression. Sadness that my child will NEVER walk, talk, read, have friends, live independently... A sense of isolation and hopelessness. (a sense of giving up, as if nothing will make a difference. No energy to work with the child to help them)

Stage 5: Acceptance. My child is OK just the way he or she is! This happens to be the "stage" where the child is all along! For the child, life, love and family are what is important, not their limitations. This is seeing the big picture. When you can truly pray, "Jesus, I trust you" you are in acceptance. It means, with God's grace, doing what can be done educationally or therapy-wise to support the child grow and mature, but with a sense of peace--loving and valuing the child JUST the way they are, and accepting them as they are.

NPR interview on the L'Arche community

What a beautiful outreach!



http://speakingoffaith.publicradio.org/programs/larche/index.shtml

Be of Good Heart....

...for I have overcome the world! (John 16:33)

It is possible to be of good heart when raising a child with special needs only through Him who overcame the world. And it is not just possible, but it is our duty and a mandate from Christ to be of good heart, placing all our trust in Him! I see the vocation to raise a child with special needs as a call within a call, to use Mother Teresa's words. This special call within the vocation of motherhood, which is an invitation to accompany Christ a bit closer in His Passion, will not be one of doom and gloom when lived with Him and for love of Him.