Parents of Handicapped or Ill Children

wendyh · Aug 27, 2007

Hey Trudy,

I'll keep you and your neice in my prayers. I happen to have 3 kids with an unusual metabolic disorder that acts alot like CP. It's not as bleak as it seems right now. Oh yeah, there are really hard times and ones faith and relationships can get strained. But as glib as it sounds, these really are times of personal growth. I'm not saying that I wouldn't prefer that my kids not have such big challenges, but life remains good.

So much depends on the particular disability. Often, kids with CP have predominantly physical issues - easier to get services for as adults. Two of my kids are non verbal which makes long term independence daunting.

The first thing to remember is that medical and educational personnel do not always know more then the parents! Your neice must become a health care consumer and actively search for professionals that she trusts and can communicate with. We have become very close with our docs and they often defer to me on issues. Egomaniac professionals, however qualified, are very hard to work with.

Insurance issues consumed much of my time in those first years of multiple therapies. Never take the insurance company's first response. I never get nasty, but I am persistent. Early record keeping is of paramount importance. I have a CD at home that is very helpful. I'll try to get the info to you. My medical records fill a credenza! Not efficient. I'm trying to get it all on my computer now. Give your neice a nice computer for Christmas!

My kids had lots of seizures when they were young so child care was problematic. At that time, our insurance was thru my work at the hospital so I had to maintain at least .5 status. That's when I was forced to count on family. Now, in my community, there are many more skilled child care options connected to the Children's Hospital.

Have your neice look into your state's T-19 or medicaid funding for sick kids. It's a daunting application process but extremely helpful.

My other standard advice is to get involved with support groups. For two reasons, the first and most important is for networking. Other parents know the most about the system and the spec. needs community. I've learned the really important things from other parents. Of course, the mental health benefits are also huge in support groups. There are gajillions of conferences and seminars that are also good places for networking and information compiling.

I'm not a good resource for sibling issues as I don't have any typically devoloping kids, but my general sence is that if handled well, sibs of special needs kids are often amazing people. Statistically, over 80% of the siblings enter the helping professions. There are lots of good books regarding how to minimize the stress on siblings. They're not gonna get as much of the attention as the special needs kid, that's just a fact.

I can't remember the other questions.

Hope I've been helpful.

Wendy

htrn · Aug 27, 2007

hi,

i have four children, my second being a daughter with oral-facial-digital sydrome, pervasive developmental disorder, bipolar and explosive personality disorder. she is 15 now.

i remember distinctly being wheeled into the nicu after the recovery room and seeing this 8lb 10oz huge baby in a warmer next to all of these preemies and micro preemies. she had ttn and was on blow by o2 for a while. i didn't know what was wrong with her at the time, but i did know that she had alot of oral deformities, was having trouble breathing and was in the nicu with all of these other very sick kids - tubes everywhere. i actually prayed that if she was going to suffer that god take her right then and not put her through weeks, or even days of suffering.

my husband and i were both active duty in the navy at the time, so we got all of our health care for her through the military. the navy was very good about, even insistent on, us being there for any surgery or doctors appointments she had. between well child check ups, ear infections, and all of her special doctors appointments - there were over 100 in the first year. that didn't include her two surgeries that first year.

it took me six months, but i found out about the birth-to-three program - have your sister find out about it in her area. katy started with speech, ot, and pt from six months and still receives some of it through the school system to this day. the early intervention is proven to really help maximize these kids potentials. it is also a way to hook your sister up with a case manager that can help her find other programs and support from other parents.

united cerebal palseyhas alot of information, support and even hosts camps for children with cp when they are older.

as far a other programs out there....there is respite care available through some programs, there is a katie beckett waiver for medical assistance that may help your sister with medical expenses.

as far as the other kids, i think my oldest (17 y/o son) has the most difficult time with katy. i think he is a little more embarrassed by some of the things she does and doesn't do. the younger two (12 y/o boy and 10 y/o girl) just think of katy as katy and love spending time with her. i feel bad because alot of our life revolves around katy - spending money ususally goes to taking her to out of town doctors and paying for the hotel room and food; we can't go to certain places or do certain things because it would be too hard on katy, etc...

because of katy's behavioral problems (the explosive personality disorder and bipolar) she became violent at home. we spend a couple of years going through hell and me getting beat up on a regular basis because i was her pcp. she went after her younger brother and sister several times as well. since then, katy has now moved in with a wonderful foster family. whe she is home things are good for the most part - but only for a few days at a time before she starts thinking about hitting again.

cp is a much different diagnosis than what we have gone through with our daughter, but there are some similarities. oh, you asked about sexuality, etc... i know tht many people with special needs kids put them on bcp to be able to predict their periods. there are also bcps out there now that you don't have to take the placebo's every month - just have a period twice a year.

as far as the boyfriend thing, katy tries to have boyfriends, but she is very closely supervised and redirected away from inappropriate comments and behavior quickly. she gets crushes alot, but has not tried to kiss anyone yet as far as i know. :nono:

i understand your questions, we had the same ones and more. it will be hard, but taking things one day at a time may be easier. there will be people all along the way to help your sister and her family along. we worried about what would happend when katy got her period from the time she was tiny. the day came and went and everything went find. i still feel a little bad for they guys at the fast food store that night though - she just had to announce to them that she finally got her period. :lol2:

ok, i've written enough. e-mail or pm me anytime if you or your sister have questions or just want someone to talk to. i know several kids with cp that have graduated highschool and gone on to college and are doing quite well living with just a little assistance.

All_Smiles_RN · Aug 27, 2007

My best friend has a 4 yr old daughter with cerebal palsy. She has a very functional form. She walks, talks, plays, and does all the things other children do. She goes to physical therapy and occupational therapy three days a week. For a short time she attended speech therapy. She spends 45 minutes at therapy. Her mom continues the exercises they taught her at home (stretching). Her biggest issue is with the muscles in her legs that prevent her from dorsiflexion. She walks on her tip-toes. She has worn leg braces to help correct this, as well as received botox injections. She recently had a surgical intervention called Gastroc Lengthening. This agency provides 100% funding for her care: http://www.cms.hhs.gov/

My friend chose to be a stay-at-home mom before her daughter, KM, was diagnosed and she has continued to do so. My friend is very protective of her daughter and provides most, if not all, of her care. My best friend and her husband have good family support; both of their parents and her siblings as well as a small group of close friends. KM is this beautiful, sweet little girl. She is my 4 yr old son's "little sweetheart". They've been friends since birth and I hope he will always look out for her. :-)

My friend is currently considering public and private school options. In the public school system, there are some limitations. Because of KM's risk of falls, the public schools say she must be in a wheelchair even though she is able to walk with braces. Private schools seem to be more flexible and I think that is the route she is favoring. It's important to plan for the future, but sometimes you need to take things one step at a time. We don't know what life will bring KM's way and what limitations she may or may not develop later. So for now, figuring out schooling is her priority.

My friend was very overwhelmed at first, but she has been doing this for 3 years now. She made it her quest to figure out as much as possible. She is always reading books and looking up information on the internet. She teaches me what she learns! She is much more comfortable now that she has this knowledge base and understanding of CP and its therapies. She has become a stronger woman because of this. I think the best thing that I do for her is to just give her my love and support. I'm her shoulder to cry on. She vents to me when she's angry. We share the joys of each accomplishment KM achieves. I remind her of what a great mother she is, making all the sacrifices that she does for her daughter.

Congrats on the birth of your beautiful little niece! Don't forget to mix happiness in the whirlwind of emotions that you are undoubtedly experiencing. You're in my thoughts Miss Trudy.

Eirene, ASN, RN · Aug 28, 2007

hi trudy!

my son (6) has spastic quadriplegia cerebral palsy. he was a 27 weeker (800 grams) and was officially diagnosed just before he was a year old.

are employers and insurance companies helpful? do extended family, neighbors, church or other friends pitch in?

our circumstances were unique. little d was adopted; we made a plan with his birthmom when she was 20 weeks along. at the time we had anthem insurance; it was a mess to even get him on the plan after his birth. his birthmom was on medicaid, we had private insurance, so it was a battle of who-will-pay-what.

do you work full-time? who cares for your child while you are away? do you do the bulk of therapy yourself?

i was an at home mom for pretty much all of little d's life, until i started nursing school. we decided to keep him in preschool as long as he could go; but he's starting elementary school next week. he didn't even have a sitter until he was 3. i did and still do all of his therapies. he has wonderful occupational, physical, and speech therapists who teach mommies great things, cutting down on going to therapies 5x/week.

when i first started nursing school, we hired a home health agency to come in to care for darren for the time i was at class and my husband was at work. it was a nightmare. i hate to say never, but i highly doubt it that we will ever have another agency come in; it was that awful.

i don't have a family of my own and my husbands parents are in their late 70's. my sister-in-laws will watch little d if an emergency arises, but it isn't often. my husband and i pretty much do everything. however, (!!!) we found a great daycare who accepted little d last summer. we utilize it when i'm in school. it's $540.00/month and worth every shiney penny. the "typical" kids love playing with d, and he gets so much socialization. i love our daycare! i'll even drop him off just so i can run errands.

are you near your child's specialists?

unfortunately, no. they are about 1 hour away at columbus childrens. but, they are totally worth the drive. and because little d qualifies for medicaid (see the paragraph below), we get "gas vouchers" to help defray the costs of gas going up to childrens. it's $20 a trip, but every little bit helps.

little d's pediatrician is a regular pediatrician who is absolutely wonderful. we feel completely safe with him and he is more than competent to care for our son. he also sees a physical medicine specialist, who has changed our lives. he gives our son several botox injections in his legs every 3 months. it's an awful procedure to see your little one go through, but its so worth it when you see the outcomes. little d used to be as straight as a board and now he actually has movements in his little long legs. he's not in pain. he is also prescribed baclofen and tizanidine to help with the spasticity.

is there special funding available to help you?

yes, yes, yes! our family didn't financially qualify for medicaid, so we applied for bureau for children with medical handicaps. they cover 100% of what our insurance (at the time) did not, even co-pays. they are wonderful about purchasing adaptive equipment.

your niece may be on a special formula or need pediasure. that stuff adds up! wic (women/infants/children) paid for little d's special formulas and then pediasure up until he was 5 years old.

help-me-grow provided free therapies (physical, occupational, speech) for little d up until he was 3 years old. after 3, he started a special-needs preschool with was 2.5 hours, 3 days a week which also provided free therapies.

shriners in chicago has a wonderful program for kids with cp. they offer so many services. not one dime was charged to our insurance (we went there for a second opinion).

when little d turned 4, we started worrying about how to make our home more accessible, about qualifying for medicaid, etc. we called our local board of mr/dd and were sent an application for the level one waiver in our state. not only does little d have medicaid (which is a huge relief), we are having a new wheelchair ramp installed this week!!! it's such a life-saver.

and, because he is on medicaid through the level one waiver-- his pediasure and pampers are totally free! medicaid picks up 100% of this cost and it is shipped directly to us from children's homecare in columbus, ohio.

we don't get any actually "money", but the services are worth their weight in gold. at first, my husband and i had mixed feeling about applying for services. we had worked hard our entire lives and had never had to ask for "help". one day our pediatrician told us, "you've paid into the system all of these years. you're not taking advantage of the system, you're finding help for your son." and it's true. the services are there for kids and families who need them. don't ever feel bad or guilty because you need a little help.

how does the future look? will siblings of your child help care for him or her when he is significantly older?

i feel that little d's future is very bright. despite his physical disabilities, he is highly intelligent and articulate. there is no doubt in my mind that he'll be able to live on his own with some outside assistance when he gets older. our oldest son (15) will also be there when we pass away. i'm young (31), so i hope i'm around long enough to make sure he is taken care of. if not, he has wonderful godparents and cousins who will make sure his needs are met. but, if he wants to live with mommy and daddy forever, that would be fine too.

forgive me if this is painful or too personal and please do not answer any questions you would rather not but have you thought about or had to deal yet with your child's sexuality, the possibility of him or her reproducing and/or wanting a boyfriend/girlfriend/spouse?

i have to laugh at this. it's not funny, but we have thought about it. people with cp can have children and marry-- and it's wonderful if they have plenty of support. i don't like to think of my little guy doing the naughty-- but it might happen someday. i tell him all of the time that he's not permitted to have a girlfriend until he's 50. he's such a handsome little devil.

my niece just had her daughter - a gorgeous little girl - with cerebral palsy. we are completely overwhelmed. all i can think about is the future of this little girl once her parents can no longer care for her and she is no longer a darling little baby.

our kids grow up. i had a little taste of it over this summer when i broke my ankle and wasn't able to lift him. to be completely honest, it was scary. i had to depend on my teenage son a lot to help me out over the summer. i'm sure it sucked for him, but that is what being part of a family is all about.

honestly, i wish my son didn't have cp. i wish he was healthy. i wish he could run around like the other typical kids. but it just isn't so. we went through a grieving period. we tried 5 unsuccessful attempts at ivf to try to become parents before adopting. our first baby, our daughter, was diagnosed with a chd when she was 8 days old and passed away at 5 months of age. and then our next baby came way to early. then he had 3 intracranial hemorrhages. and then we had to come to a decision to take him off of his support or let him fight just a little longer. and then he wasn't meeting his milestones and i knew something was wrong. and then we had the official diagnosis of cp. we often questioned "why???" it just wasn't fair. but 6 years later, we've resolved a lot of the why's and have just accepted the way our lives are and enjoy our son with every ounce of our being. but, we are human. we get tired. we get depressed. but the happy times beat the sad times.

i know the one thing we must never do is extinguish hope but i know too much about institutions to be happy or very hopeful.

never, ever give up on hope. it's carried us a long way. there is hope. your family needs to get their support network set up asap. after working their way through the challenges of the medically-obsessed or therapy-driven life at first, then you can celebrate the joy you've been given. i know it's a cliche, but it's so true. these kids are indeed special.

i know this was a long post, and i apologize. but i want to add a writing that was given to me a long time ago. it still gives me shivers because it is so true.

when you're going to have a baby, it's like planning a fabulous vacation trip to italy. you buy a bunch of guidebooks and make your wonderful plans: the coliseum, michelangelo's david, the gondolas in venice. you may learn some handy phrases in italian. it's all very exciting.

after months of eager anticipation, the day finally arrives. you pack your bags and off you go. several hours later, the plane lands. the stewardess comes in and says, "welcome to holland. "holland?!?" you say. "what do you mean holland?? i signed up for italy! i'm supposed to be in italy. all my life i've dreamed of going to italy."

but there's been a change in the flight plan. they've landed in holland and there you must stay.

the important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. it's just a different place.

so you must go out and buy new guidebooks. and you must learn a whole new language. and you will meet a whole new group of people you would never have met.

it's just a different place. it's slower-paced than italy, less flashy than italy. but after you've been there for a while and you catch your breath, you look around and you begin to notice that holland has windmills – and holland has tulips. holland even has rembrandts.

but everyone you know is busy coming and going from italy ... and they're all bragging about what a wonderful time they had there. and for the rest of your life, you will say, "yes, that's where i was supposed to go. that's what i had planned."

and the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss.

but if you spend your life mourning the fact that you didn't get to italy, you many never be free to enjoy the very special, the very lovely things about holland.

if you'd like to read more about my family, please visit my homepage and click the tab "all about the author".

IndyGal · Aug 31, 2007

I used to have a coworker with cerebral palsy (this was an editorial office job in a publishing company). She was a very bright girl, in a wheelchair but with enough mobility to operate a mouse and keyboard (slowly). Because of her physical disabilities she didn't carry the same workload volume as the rest of the group, but the quality of her work was outstanding and she fit in well with the team. She was fairly independent -- had someone to take her to work and help at home, and once at work some of the other girls in the office would help her with restroom breaks and personal needs. Eventually she negotiated a telecommuting contract and was able to work from home full-time. At any rate, she was a great example of someone who had an amazingly normal life despite disabilities. I've lost touch and don't know what she's doing now, but it wouldn't surprise me in the least to hear she'd gotten married.

Valanda · Aug 31, 2007

My best friend has a 4 yr old daughter with cerebal palsy. She has a very functional form. She walks, talks, plays, and does all the things other children do. She goes to physical therapy and occupational therapy three days a week.
My friend is currently considering public and private school options. In the public school system, there are some limitations. Because of KM's risk of falls, the public schools say she must be in a wheelchair even though she is able to walk with braces. Private schools seem to be more flexible and I think that is the route she is favoring. It's important to plan for the future, but sometimes you need to take things one step at a time. We don't know what life will bring KM's way and what limitations she may or may not develop later. So for now, figuring out schooling is her priority.

I just wanted to suggest that your friend may want to look into getting a gait trainer for her child. It is nearly impossible to fall out of a gait trainer and may allow her to attend public school without the confinement of a wheelchair. http://www.mulhollandinc.com/GaitTrainer.asp

I have two handicapped children. One is blind and autistic and nearly 17. The other has CP with spastic quadriplegia and 14. I constantly hear from the schools how they can't do this or that. It's a never-ending fight.