Sunday, October 7, 2007

Growing up special: Families adjust to life with unique children

Telegram Staff Writer

'People think it's sad to have kids like ours, but it's not,' said Barbara Kane of Killeen. 'We laugh more than anything.'
Mrs. Kane's 8-year-old son, Matthew, was born with Negative 2P, a rare chromosomal disorder that limits physical and intellectual ability.
'We make sure there's a lot of laughter,' Mrs. Kane said. 'You don't think about the future. You never know about tomorrow. All you have is today.'
That philosophy, she said, makes the good things so much more special and the bad things not worth mentioning.
Mira Lopez of Copperas Cove agreed. She's also the mother of a special-needs child.
'Treating kids as typical is our biggest goal,' Mrs. Lopez said. 'It's the way we, as parents, evolved. It started with us going to bed crying, but you can't live life that way.'
Typical - not normal - is the word the two women like to use for others, the people who Mrs. Kane said are NDA, not diagnosed with anything.
'We don't say normal because who knows what that is?' Mrs. Lopez said. 'None of us are normal.' 

The cost
Mrs. Lopez's 8-year-old daughter, Ramona, lives with a chromosomal disorder called Trisomy 13. It made Ramona blind, deaf and unable to move without assistance.
Paying medical bills was a constant struggle, Mrs. Lopez said, so Ramon Lopez, the uncle for whom her daughter was named, launched the annual Ramona Mae Lopez Benefit Softball Tournament in 2002.
'He said it could be a way for a whole community to care for special-needs children one family at a time,' Mrs. Lopez said.
In a phone interview, R. Lopez said caring for children is what life is about.
'I believe that everyone should pay (favors) forward,' R. Lopez said. 'The tournament is one way we can do that. It's a one-day tournament, but it will help the families throughout the whole year.'
The Kanes and the Dubcaks from Temple will be the families who benefit from this year's tournament. Joshua Dubcak, 14, has muscular dystrophy.
Mrs. Lopez works with Mary Klentzman from the Children's Special Needs Network in Belton to locate families with special-needs children.
'The families can't already receive government services like Medicaid,' Ms. Klentzman said. 'This benefit is about helping those families who fall through the cracks. The ones who make too much money to qualify for Medicaid, the ones whose insurance doesn't accommodate all the need.'
To illustrate the expense of equipment for special-needs children, Ms. Klentzman said mid-level quality wheelchairs cost $6,000-$7,000.
'And most insurance will only pay only $1,000 of that,' Ms. Klentzman said. 'Care and equipment for special-needs children are constant. It doesn't stop.'
The Lopez family, the first to benefit from the annual tournament, used the funds raised to purchase a wheelchair lift and a vehicle that was large enough to accommodate Ramona and all her equipment.
'It was to improve her quality of life,' Mrs. Lopez said.
The extra money from the tournament, Mrs. Kane said, will pay for some medical bills and cover expenses for therapy and homeschooling.
Joshua's mother, Carrol Dubcak, said their portion of money raised at the tournament will finance Joshua's insurance copays.
'We're up at Scott and White (Hospital) three to four times a week for doctor visits,' Mrs. Dubcak said. 'He takes 12 medications a day - and he's about to have surgery.'
The surgery is to combat Joshua's scoleosis - abnormal curvature in the spine.
'It's major surgery,' Mrs. Dubcak said, already worried. 'There'll be two days where he's in a medically-induced coma.' 

Learning lessons
Responsibility and chores don't disappear because of disability.
'There's a fine line in the way you parent kids like ours,' Mrs. Kane said. 'You give him responsibility like any other child.'
If Matthew makes a mess, his mother said, he cleans it up. There's bedtime and there's brushing teeth.
'You treat him normal,' Mrs. Kane said. 'You're making adjustments for disability - not excuses or exceptions.'
Manners are just as important too.
Almost on cue, Matthew dropped a toy when his mother finished speaking.
Having rolled underneath a table, Mrs. Kane asked Matthew if he needed Mama's help. He nodded his head.
'What do you say?' Mrs. Kane asked her son.
A 'paaah' sound came from Matthew. It was his attempt to say the 'p' in 'please.'
'That's good,' Mrs. Kane said as she handed Matthew his toy.
She kissed him on the cheek.
'Not bad for a child who supposedly has the mind of a 2 year old,' Mrs. Kane said looking at her friend, Mrs. Lopez.
'Just the other day he figured out how to put movies in the DVD player,' Mrs. Kane said. 

Brothers and sisters
'When Matthew was born, the doctors told us not to keep him,' Mrs. Kane said, 'They said we should put him in a nursing home.'
No mother wants to hear that.
'I can't imagine not having him as part of our family.
Neither can 10-year-old Steven Kane, Matthew's big brother.
'It's interesting,' Steven said about his experience of having a special-needs sibling. 'I've had a lot of opportunities that otherwise wouldn't have come up if I didn't have a brother like this guy.'
Steven started to list the perks: 'You get to go to neat places, you have free access to rides at SeaWorld, you get free parking.'
The youngster's eyes twinkled as he giggled.
'Having a brother like Matthew is great,' Steven said. 'He's playful ... He'll always be my little brother.'
There isn't much sibling rivalry between Steven and Matthew.
'Sometimes we do get into a jumble like when I wrestle with dad on the trampoline,' Steven said.
'Matthew loves his dad,' Mrs. Kane added. 'He'll get jealous if Steven gets too much of dad's attention.
'And sometimes,' Steven said, 'If I'm in Matt's room and he doesn't want me there, he'll let me know or if it's bed time, he'll let me know that too. He starts screaming and fussing.'
But most of the time, Mrs. Kane said, 'It's just like what you see now, between the two of them.'
While Steven was talking, he never stopped paying attention to his younger brother. Steven ruffled the hair on Matthew's head, made faces at him, rolled him back and forth in his wheelchair - anything to get a laugh.
'It's perpetual play time at our house,' Mrs. Kane said.
Rachel Lopez is Ramona's big sister. She's 13.
'It's more fun that it is sad to have a sister like mine,' Rachel said. 'I talk to her forever and ever. I can tell her anything and everything, and she won't rat me out. It's not like she can go tell mom.'
Rachel laughed and then said, 'I love her to death.'
Sibling rivalry also is a non-issue between Rachel and Ramona.
'We don't have the fights that typical kids have,' Rachel said.
'If anything,' Mrs. Kane said, 'Rachel is protective and loving. She'll be laid up on Mona's bed - and they'll be cracking up, laughing. The rest of us don't know what was said or what happened. It's just between them.'

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