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  1. #1
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    Dec. 21, 2005
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    Colorado Springs, CO
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    Default Any other parents of disabled children?

    I've been looking for a place to vent, and this seems like as good a place as any.

    My 5 year old daughter, Lily, has cerebral palsy. She was born 15 weeks premature, resulting in severe brain hemorrhage. Though she crawls very well, she can not stand or walk. She has very little use of her left arm and hand. She also suffers from seizures and has some pretty severe behavioral issues which include screaming, hitting, and self injury. Her speech is on the level of a 2 year old, but it is clear to everyone that she is very intelligent. Lily is basically a perpetual toddler. With my son, I survived toddlerhood because I knew he would grow out of it. With Lily, this has not been the case.

    What frustrates me most is the total lack of support for parents of children in this situation. If I need a break from my 6 year old son, I can enroll him in camp or a sports program. This is simply not the case with Lily. Even finding a baby sitter who is qualified to care for her is nearly impossible.

    I must admit, I never wanted children. I had kids because I thought it was what I was "expected" to do. Though I love my children dearly, sometimes I don't feel like I am equipped to handle Lily's needs. My husband is very supportive, and does what he can, but there is only so much he can do. I would love nothing more than to go out and get a job, but Lily's unpredictable health and frequent doctor's appointments make it impossible for me to commit to any sort of a schedule.

    Ultimately, I feel like I have completely lost my identity for the sake of my daughter. My hopes of a career are over, I had to give up my sports car for a mini van to accommodate Lily's wheelchair, and I often have to skip vacations and other family events because Lily can not go.

    Anyway, thanks for letting me vent. If anyone knows of and support programs or resources, I would love to hear of them.
    "Is it ignorance or apathy? Hey, I don't know and I don't care." ~Jimmy Buffett



  2. #2
    Join Date
    Apr. 29, 2006
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    3,292

    Default

    Not a parent but have worked with children with disabilities for many years. Your feelings are totally normal. It is a huge job.

    Can you ask your doctor or look on the internet for services for children with special needs in your community? In our area, parents can apply for in-home caregivers, week-end placement with specialized services (like an overnight camp for the kids), and respite services. There are also services available to assist the kids in daycare placements and then with school services when they are old enough.

    Is there a local association for parents with children with cerebral palsy or for children born prematurely? Perhaps if you called the neonatal ward at your local hospital, they could direct you to services or put you in touch with a Social Worker familiar with the system in your area.

    Your hospital may also have a resource centre (like a library) you could access. They may also have ideas about who to contact for services in your area.

    Sometimes it does take a bit a legwork to make connections to get the help you need.

    Perhaps ask you your daughter's doctor for a referral to an Occupational Therapist. They can do wonders with children to help destimulate them and reduce the screaming and self-injury through different therapies and environmental accommodations.

    All the best. Cyber hugs.



  3. #3
    Join Date
    Jan. 11, 2010
    Location
    VA
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    433

    Default

    I'm sorry you are feeling frustrated. I am a special education teacher, but work mostly with children who have learning disabilities. I'm sure you know that your daughter is eligible for services provided by your local public school district. I would think there also would be information and/or services provided on the internet by various CP resources.

    I also grew up with a brother who has Down's Syndrome and was multi - handicapped. It is hard and frustrating, but also can be very rewarding.

    It seems you need to find a support group in your area to help you deal with your situation. Good luck and God bless you and your family.



  4. #4
    Join Date
    Aug. 3, 2004
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    San Francisco
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    Default

    I have a 30 year autistic son. there were not many support services when he was first diagnosed. but California had good laws. I was very forceful with the school system to require them to give him (and other students) the support they needed. He is doing great as an adult.

    Hang in there. Reach out. There are many walking your path.
    A man must love a thing very much if he not only practices it without any hope of fame or money, but even practices it without any hope of doing it well.--G. K. Chesterton



  5. #5
    Join Date
    Jul. 11, 2003
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    1,400

    Default

    I'm young and don't have kids but someone who isn't sure if she ever wants kids I can't imagine how difficult this must be for you! I can't offer anything but sympathy, hopefully others will chime in with advice. You mentioned sometimes you get left out of vacations and family gatherings because Lily can't go, that seems a little unfair! I'd think your family would make an effort keep this from happening. I could see how it would be really hard to find a babysitter capable or willing to care for your daughter but are there not places that offer day care for children with disabilities? Surely there are other parents who have children with disabilities but both parents still work. I'd think this type of day care would be more expensive, but it should exist! It sounds like you really need some time for yourself so you don't stop being who you are outside of being a mom and your family should realize that this is important for your health in the long run. Good luck!



  6. #6
    Join Date
    Jul. 13, 2006
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    2,444

    Default

    My sister worked for a special needs school including kids very much like what Lily sounds like. The school had a sliding scale for tuition dependant on what the parents could afford, and what state services would cover. The teachers would assess the skills and put them in classes based upon needs, not age. My sister worked for the lifeskills class that was for the most disabled children. The class was exactly what it sounds like teaching the children how to live, what to touch, what not to touch, how to move around, how to ask for assistance. Definately look into what services are available to you. This school had hours from 7am to 6 pm, so you could go back to work if that is what you chose to do. In the meantime, hang in there, there are a lot of parents just like you in your area that you probably don't even know of.

    Oh and just as another resource for weekends and such, my sister still babysits on some weekends for special needs kids. It is more expensive then a normal teen babysitter, but well worth the price of your sanity. Perhaps when your looking around and when you find her a school you can ask them if any of the teachers are looking for any outside hours to pick up.



  7. #7
    Join Date
    Sep. 24, 2003
    Location
    Bristol, TN
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    Default

    I second the idea of finding a babysitter who can be taught to take care of her. When I was a child I had a really great sitter who was a retired teacher--someone like that would be ideal. I would also really investigate what the school system can offer you--my allergist has a very handicapped child with seizures, and she goes to a special-needs class every day. It's not perfect, but it helps.

    Are there any parent support groups in your area? Does the national cerebral palsy or the hospital offer anything worthwhile? What about respite care such as they have sometimes for alzeheimer's?

    This is hard and it will stay hard, but you shouldn't have to bear it alone. Are there things you can do for yourself, either at home or part-time? What about Therapeutic Riding for Lily? If you're here on this board, you ride; she could start to learn something you love, and it would be super for her physically as well.

    Good luck.



  8. #8
    Join Date
    Feb. 18, 2005
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    914

    Default

    I second Gully's question about Therapeutic Riding. I am a NARHA instructor and have many students that sound similar to Lilly. Besides the physical, mental, social, and emotional benefits to Lilly, if nothing else, it would give you 40 minutes (or more) to breathe a week. Plus, you might find an instructor or capable volunteer who might be willing to sit for you.



  9. #9
    Join Date
    Jul. 29, 2006
    Location
    Colorado- Yee Haw!
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    2,738

    Default

    First Hugs! I can't imagine what you are going through. Our neighbor has down's and I know it is really hard on her mom. She actually just went back to work full time this year - I know she felt that she needed a break and to re-identify with herself. Her daughter attends the same daycare as my daughter for after school care and is doing great. The day care is a mainstream daycare but they have quite a few children with special needs attending (all the way to wheelchair bound kids which need to be fed specially.) Many of these kids have therapists that come from the school district to work with them during the day. I don't know a lot of details- but the school district provides a lot of therapy to kids who are deemed to need it as part of early intervention.

    I know she is also part of a down's parent support group which she has found really helpful.

    Don't feel bad for venting. I am sometimes very happy to drop my daughter off at daycare and head out to work! Everyone needs a break sometimes. I hope you can find a better support system!



  10. #10
    Join Date
    Nov. 13, 2002
    Location
    Maryland
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    3,570

    Default

    Have you looked at schooling options?
    Under the Individuals with Disabilities Education Act, she is entitled to schooling appropriate for her disabilties and since she is school-age now, that should be kicking in.
    There is something about the outside of a horse that is good for the inside of a man.(Churchill)



  11. #11
    Join Date
    Dec. 21, 2005
    Location
    Colorado Springs, CO
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    Default

    Thanks everyone for the support. As I write this, Lily is sitting on the floor at my feet having a tantrum. Sometimes all I can do is ignore her and wait for it to pass.

    Lily is in kindergarten. She is in a special education class with 2 other children. The problem is that she is totally unlike anyone else in her school, or the district for that matter. All of the other kids have either physical or mental disabilities, none have both as Lily does. As a result, I think she becomes more frustrated at her inability to relate to other children her age. Her being in school does give me some time during the week, but I frequently get calls from her teachers and very often have to pick her up because she's had a seizure or is having a tantrum and has hurt herself. I can't commit to anything because I am constantly on call.

    I have looked at special schools. When we lived in Orlando, she attended United Cerebral Palsy's school, but there is nothing like that where we live now. The main problem seems to be her combined issues. There are schools for the physically disabled and there are schools for the mentally disabled. I have yet to find a school which is equipped to manage both.

    Lily has done therapeutic riding in the past. She did not seem to enjoy it much and spent the majority of the time trying to remove her helmet. I do plan to try it again in the future.

    Thanks again for the suggestions and support. Sometimes it just feels better to get it all out.
    "Is it ignorance or apathy? Hey, I don't know and I don't care." ~Jimmy Buffett



  12. #12
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    Sep. 7, 2009
    Location
    Lexington, KY
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    Default

    Where are you in Florida? I know there are a couple of gyms that have programs for special needs kids. My gym in Maryland had a special needs sensory motor program for children. It was wonderful.

    Google gymnastics for special needs children. A lot of our kids also went to therapeutic riding.



  13. #13
    Join Date
    May. 6, 2004
    Location
    Charlotte
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    Default

    Have you ever heard of Victory Junction Gang Camp? It is located in NC, about an hour north of Charlotte. It is a for children with medical and developmental issues, and the camp runs its weeks based on the needs. For example, they have a whole week that is just kids with CP, or a whole week for burn patients. They even have a week for children who cannot even sit up- honestly, they wheel them around in their beds. It's a really amazing place (I got to visit and meet the owners last January). It has doctors and nurses on staff 24 hours a day, and all of the counselors have undergone a certain amount of medical training. Look into it- it's a very unique opportunity.
    "Life is too short to be a slave to the whims of others." -- RugBug, COTH



  14. #14
    Join Date
    Oct. 28, 2008
    Location
    UK
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    831

    Default

    OP,
    I am neither a parent, nor a carer for handicapped children, but I do have cousins on each side that are severely disabled. One with CP, the other autistic. I can absolutely understand and feel both your frustration and Lily's, you are, I am sure doing a fantastic job, and I'm sure you'll continue to do so. It is frustrating, it is hard and it must feel unbearably claustrophobic at times.

    If there is no group in your area, can you maybe start one? I know, that may sound as though I think you have nothing else in the world to do but on the other hand it might give you a reason to reconnect with Lily's old school in a semi permanent way and with other groups throughout the states as you seek their advice in how to start up a really practical, really useful support group that benefits both the kids and the parents and the siblings.

    Even though some of those groups might physically be a long way away from you, it gives you an avenue to approach them and have adult conversations about how to make your situation easier. If every time you feel frustrated with Lily you can pick up the phone and make enquiries with a group, whether they're in Alaska or New Mexico, you will be making real progress, for you and Lily, but also others in your area... and there will be others.

    Write a list of things you want to know... for now, and for the future... then go ask them! The kind of support group you need will become clear. And to be honest, even if you're in a really remote area and know there's no-one near you to form a group with, approach these other groups about 'virtual' groups - set up Skype calls, yahoo forums etc. It may not give Lily the support you'd like, but indirectly it might as you know what to expect in the future.

    Good luck, I really admire parents in your situation because I know how hard I would find it. I hope Lily is able to find some peers equally intelligent, with similar needs and that you find the support of other parents.



  15. #15
    Join Date
    Aug. 12, 2010
    Location
    Westford, Massachusetts
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    3,378

    Default

    My older son was born 14 weeks prematurely, but he was fortunate enough to have mature lungs (bizarre, actually) and after three years in IEP and two years of services from the public schools for motor delays, he's had no apparent lingering problems at age 20, there are some very subtle learning and emotional issues, but that's about it that we're aware of.

    How do you decide where to live? Is it because of your husband's work? In your situation, if there's ANY flexibility at all, with his work and finances, it would be worth it to choose a place to live that offers good services and support for disabled children...every state and school district is different in what they offer, with some doing a much better job than others. Not only does your daughter need the best support and educational experience available, but YOU need to have a life of your own too.



  16. #16
    Join Date
    Apr. 30, 2003
    Posts
    614

    Default

    I work with disabled kids, but I'm in PA.
    First of all (((hugs))), secondly - I'm going to try to relay what is available in PA, so you might be able to track down service in FL.

    You know your daughter best and are her best advocate.

    In our state, kids with disabilities can receive service in the home (OT, PT, Speech, vision, hearing, etc.) until the age of 3.

    Ages 3-5yrs, 11mths, they go to Early Intervention at a school site. There, they also receive whatever related services they may need.

    At school age, transition they attend a special needs class depending on where they fit the best (i.e. just b/c you have Autism doesn't necessarily mean you go to Autistic Support)

    In our state we have Learning Support to support kids who are lagging behind because of a Learning Disability, but can learn the grade-age curriculum with help.

    We have Life Skills Support for kids with mental impairments and need help learning their daily living skills, as well as their academics.

    Physical Support is for kids who may have some learning difficulties, but the bulk of their problems stem from their physical impairments.

    Multiple Disabilities Support is for kids with both mental impairments, as well as orthopedic impairments.

    We also have other classes, but it sounds like your daughter would fit in one of the above. Most of the above kids receive Speech services, as well.


    PA really doesn't make it easy for parents, either.
    Get yourself hooked up with your local Mental Health/Mental Retardation (or whatever they might call it) - they can provide a lot of service. they will want your daughter's Evaluation and IEP to prove she's a child with needs.

    They can hook you up with Respite, which it sounds like you need.
    This is basically babysitting, so the parents can get a break. You can get monies from your MH/MR to either pay a trusted person (your mom, sister, etc.) or MH/MR has specially trained parents who can take care of your child while you.....have date night twice a month. Go away to a wedding for the weekend. Get tons of chores done without the kids in the house...whatever you want to do to take a mental break.

    MH/MR also has monies that can provide for outside services, such as riding therapy, special needs camp, etc. BUT you have to get on their list!

    They also have the monies to help you get the special items you need, whether they be diapers (as she gets bigger) or a Rifton chair for the home, or a stander, switches, etc.

    Also if you haven't already accessed - the government provides Medical Access for children with disabilities. She can get her own insurance, which will pay for meds and services that your own insurance doesn't cover, such as private speech therapy, as well as, braces (MAFOs) and her wheelchair.

    Lastly, if you're having trouble with your school district or MH/MR and can't seem to make progress, get yourself an advocate. They have "jumped through the hoops" many, many times and know just what to do and who to call to simplify the process.

    Hang in there - it is a HUGE responsibility to have a child, then add in special needs and any parent would feel overwhelmed.

    Surround yourself with supports - don't let yourself feel alone, there are lots of parents out there who understand.

    For ex. across 2 districts (one large and one small) I have 32 kids with multiple disabilities from ages 5 to 21. We have 12 who attend Physical Support and we have @225 kids in Life Skills Support.

    So- they are out there!!



  17. #17
    Join Date
    Aug. 30, 2000
    Location
    Greensboro, NC
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    Default

    I don't have children, but have been involved with therapeutic riding and kids with disabilities for 18 years, and I have watched a LOT of parents struggle. It is definitely not easy, and the resources available are never enough.

    Therapeutic riding is definitely not for every child, but it is also definitely worth trying again periodically, because kids change. If horses are not her thing, I would try to find some kind of activity that will accommodate her needs - because it will give her something to do, but also because while she is riding, in the pool, whatever, you will be standing around with the other parents, and it will give you a support group. Sometimes calling another parent with a slightly older child is really useful for tracking down programs, babysitters, etc. If you are near a college, you might be able to find students that could help--I worked as a behavioral therapist for an autistic child while I was in college, and loved it. The family used the child's therapists as babysitters, too, since we knew him and could manage his behavior.

    Victory Junction is an awesome place and definitely worth looking into.

    I'm sure you've already tried this, but perhaps her doctors could help you with referrals? If there is just no one in your area, I would look for a mom's group online. You definitely need a place to vent, and if it is to people who have been there, so much the better. Hugs--hope your situation gets better!



  18. #18
    Join Date
    Dec. 21, 2005
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    Colorado Springs, CO
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    Default

    Thanks again everyone! I will look into Victory Junction. My husband is a rabid NASCAR fan, so we have certainly heard of it. I don't know if they would take Lily because of this one line on their web site, "Children must be socially competent, not exhibiting unwanted behaviors which warrant removal from a group activity or setting." The behaviors that may exclude Lily from their program are exactly the behaviors that I need a break from.

    Moving is not an option. We actually returned to Florida a bit over a year ago. Lily was born in Minnesota, and I will admit, the healthcare options were better there. Lily was a big consideration in the move, but ultimately DH and I decided that we could not let Lily's condition dictate every aspect of our lives and that we needed to go where we thought the family as a whole would be better off.

    I guess my biggest problem is that I am not the "mommy" type. While a lot of moms are happy to stand around and talk about "mom stuff" while the kids are doing therapeutic riding, or whatever else, I absolutely dread such conversations. They undoubtedly always turn into a "my kid's sicker than your kid" contest.

    Thanks again to everyone for support and suggestions!
    "Is it ignorance or apathy? Hey, I don't know and I don't care." ~Jimmy Buffett



  19. #19
    Join Date
    Jul. 31, 2007
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    14,888

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    Quote Originally Posted by Curb Appeal View Post
    I guess my biggest problem is that I am not the "mommy" type. While a lot of moms are happy to stand around and talk about "mom stuff" while the kids are doing therapeutic riding, or whatever else, I absolutely dread such conversations. They undoubtedly always turn into a "my kid's sicker than your kid" contest.

    Thanks again to everyone for support and suggestions!
    No one has mentioned this yet and you did a bit: How is your partnership with Hubs on the kid-raising front?

    It sounds a bit like Lily and your other kids are officially your job. I do appreciate that someone needs to be on-call from what you describe. But that does not have to be you 100% of the time.

    My mom, an audiologist, sometimes works with families who have severely autistic kids. Happily, the people who find their way to her office for some PT-like training for their kids are doing a good job.

    She tells me that what makes that work is three things:

    1) A family who accepts that their disabled child simply put them on a different path, not a crappy one.

    2) A family who participates fully and collectively.

    Most often, it's the mom driving the kid around to appointments. But those women have supportive husbands who share the day-to-day job of caring for their kid. (That does sound like "normal" to me for any child, disabled or not!)

    3) A healthy sense of power and entitlement. That means these mothers *know* that they need a break from the full-time job and identity of care-giver to their kid. They make no apology for wanting that. For that reason, these parents go balls-out to get help from their school system, support groups, baby-sitters, and anyone else who can support them.

    These women (and men) are determined, "steel magnolia" types. They are persistent, clever and diplomatic enough to negotiate with others for the help they- and their kid needs. I think they also resist the temptation to just keep going along doing all of the 24/7 care themselves.

    No doubt about it, you have your work cut out for you. But it may be worth thinking with you, your hubs and other parents with similar kids about how to *change* how you are working to care for Lily, the rest of your family and YOU.
    The armchair saddler
    Politically Pro-Cat



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