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Disabled Child: Advice for Parents of Disabled Children

Anyone with kids would know that raising children can become a part-time job on its own. Raising a disabled child comes with added responsibilities and caretaking. Even though parenting disabled children is similar to regular kids, additional help and support is required for the excessive financial and emotional pressure that falls on parents. It is important to research and take the help of the State and Federal Government, wherever applicable, as they are legally bound to help a disabled child in their educational and other needs. Other forms of help for your disabled child can be obtained from the numerous communities formed by various organizations globally.

Who Is Responsible For Raising A Disabled Child?

A lifelong debate has been on the topic of who is responsible for caring for a disabled child. Is it the Federal government? Is it the State? Or is it the parents of disabled children? Even though arguments have been made for all of them separately, it is actually a combined effort of all of them coming together that would ultimately benefit a disabled child. Parenting disabled children can be a challenging task but in the initial stages of their lives, raising a disabled child is similar to raising a non-disabled one. The disabled child needs the same kind of love, upbringing and habit forming atmosphere as any other kid would demand. In addition to this, extra disabled child help may be required; such as frequent visits to the hospital, mobility care, special schools and expensive assistive technology equipments. Financial help for this can be obtained from various social security and other benefit programs by the Federal Government, as well as the State. The responsibility of providing adequate education to the disabled child falls on the State until the child turns 18. They must provide appropriate facilities and accommodate transportation needs of the disabled child as much as possible. With the financial factor taken care of, it is ultimately the parents who are always the primary caregiver. They help in raising the disabled child and providing them with all the love and emotional support they can offer.

Disabled Child Help & Support

Raising disabled children can be a very challenging task. Apart from the regular issues faced by parents of other children, parenting disabled children come with their own set of setbacks and difficulties. However, a disabled child deserves just as much attention and care, if not more. In order to help parents of disabled children in their journey of raising their child, many communities and groups have been formed. These groups seek to provide disabled child help to parents of disabled children and hope to form a platform where ideas and experiences can be exchanged in order to help others in similar situations. Some of the commonly known disabled child help groups are:

  • Special Child (1): This website is provided by the Resource Foundation of Children with Challenges (RFCC). It is a non-profit, charity organization which forms a community of parents of disabled children who meet there to discuss their life experiences with others. It provides numerous helpful tips on raising a disabled child and also gives information on various types of disabilities.
  • Loving Your Disabled Child (2): This community has been formed by parents of disabled children who are keen on helping others in the same situation. They feel that there is not enough emotional, spiritual and educational support available for individuals like them and want to lend a hand out to anyone who needs it.
  • Henry Spink Foundation (3): This is an independently run organization which aims to provide as much professional disabled child help and information as it can. Apart from educating parents of disabled children more about the disability, it also provides current information on therapies, surgeries and medication opportunities that are available to help their disabled child.

While we see that disabled child help is available from the Government in many different forms, it is ultimately the parents of the disabled child who must provide and care for them. A disabled child requires emotional support, more than anything else, for them to grow and mature. Help regarding parenting disabled children can be obtained from various organizations which discuss stories of individuals facing similar situations. Reach out and look around, a disabled child is welcomed and supported by several people who know and understand what parents of disabled children go through and are willing to help in any way possible.

References:

  1. Special Child
  2. Loving Your Disabled Child
  3. The Henry Spink Foundation

7 thoughts on “Disabled Child: Advice for Parents of Disabled Children

  1. I am a mother of a severly autistic child who requires constant supervision for safety and to prevent the destruction of numerous things in our home as well as urinating outside of the toilet. As a full time working, soon to be divorced Mom, I am not eligible for help. I am not rich and work overtime just to be able to pay all my bills. I have 3 other healthy children under the age of 13 who have had to take on a lot of responsibility. What kills me is that as an RN in the Bronx, much of my patient load are healthy single parents unemployed and on medicaid. Or they have come to this country and are immediately set up with public assistance. What happened to sponsors? They are receiving free housing, food stamps, free medical etc. A number of my other patients are government sponsored drug addicts who are still drug addicts but now it’s “legal” since a doctor prescribes their methadone, oxycontin, valium and a host of other addicting drugs. They are allowed to have child after child they are unable to care for, at tax payers expense and receive SSI. Am I angry? You guessed it. I have worked my entire life, married and saved for a house before I had children. We have paid thousands out of pocket for therapy since insurance won’t pay for autistic therapy claiming it’s an educational issue although we all know it’s a neurological disorder. Where am i going with this? My son needs constant attention to prevent the destruction of our home and to maintain safety as I mentioned earlier. After years of begging, I receive 4 hours of respite and 4 hours of reshab but it’s on the days they can do and not necesarily when i need it. A bed ridden cerebral palsy child could get 24 hour care. My son , who is way more work because he can ambulate, open windows, tears things up, has broken half the chairs in my kitchen, destroyed a recliner chair and couch, raids the refrigerator and cabinets that we have to remember to lock them constantly, takes all the paintings off the walls , broken more than half the window grids in our home pees around the toilet instead of in it, and at 150 pounds needs toilet hygiene care, and total care for bathing and oral hygiene. He can also be agessive when angry. But because he is autistic, I can’t have the home health aid he desparately needs. I’ve met too many who give their kids up into residential programs. How much does that cost the government? Isn’t it better they help working taxpayers us so that we can keep our kids home? When I asked the government for help they told me I’d have to leave my job, sell my house and car and then they’d help me. So they’d rather help those who pay no taxes and set the example to their children that one should not work, but instead, take, take , take from the working taxpayers? It’s better for the child and cheaper for the government if they would assist the working parent who is setting a good example for her children. Any advice. I’m bordering on a nervous breakdown. I so love my son. He can’t help what he does but it’s sooooo hard to deal with. Help me please.

  2. Oh Laura I am in the same boat as you are, however my son is only 6. Our children sound so alike in so many ways, peeing outside the toliet, breaking things ripping things up, tearing down the window treatments etc. the list is endless. I am also recently divorced, and praying that I can find some finanical assistance as I was awarded the family home as to not break my sons schedule or upset him anymore then he already is due to the fact I was a stay at home mom since he was born and now have to work full time.

    What a lonely battle I have ahead of me. I hope and pray that things will get better for you. Please dont feel you are alone, email me anytime NJKH73@yahoo.com.
    Karen

  3. its hard i have a child who has autism and has seizures a lot, who also been diagnosed with mr i cant work or go to school the school calls all the time eather she is crying of headaches or having a temper tantrum because water spilled on her or someone touched her its hard living of social security what to do i need advice

  4. I am a single mother of 3 boys all are under the age of 7. My youngest son is autistic (age 4). He was born with bleeding on the left frontal lobe of his brain. He condition makes it extremely hard for me to deal with. He screams, yells, bites, hits, and bangs his head on the floor if he cant have his way or when he’s agitated. Months back I had to quit my job because I din’t have a reliable babysitter. I catch hell trying to keep my place in order because he tears down curtains, blinds, wall pictures, and knocks over lamps. He barely sleep so he’s on medication for his lack of sleep and sometimes have seizures, in which is also being treated. He wakes up in the middle of the night going through anything possible he can find. He also unlocks the door and go outside. Im still waiting for my request to have a dead bolt lock on the door. He’s still not fully potty trained and whenever I put him on underwear he uses the potty well but never have a bowel movement. But as soon as I put a diaper on he passes a stool…everytime. He’s enrolled in school but he only goes on Tuesday and Wednesday from 8 to 11:30am. His behavior problem seems uncontrollable at times. Most days I sit and pray I can receive help with getting him up to Atlanta or Roswell Georgia to provide educational help for my son. I’ve did research on some schools for kids with neurological developement. I want to move to Roswell, Georgia so he can get the help he needs and I can find a job to support me and my boys. The cost of living is way more expensive than here in Bainbridge, Georgia. Is there any way the government can provide homes for parents or a single parent with a disabled child?

    I’m a 21yr old African American, single mother of 3boys aging from 6,4 and 4. They all have the same father but is very much absent in my kids life. If anyone is reading this message and can help please contact me on my email at erlronnicawashington@gmail.com. I could really use a helping hand. Please and thankyou!!!

  5. I understand everything and have me blessings in the future. I just found out my x does not want my son anymore, or says she can’t take care of him (plays the victim). She is getting a divorce now and expects me take my son, who has Downs Syndrome. At birth, his left frontal Lobe was destroyed. He still wears diapers, I feed him and I hope and pray that nothing happens to me when he is here. He would not be able to care for himself. He does not speak and requires constant monitoring. He’s a good boy, 16 and has a few behavioral issues that require patiences and nothing more. The x just not want her time taken up with him. Those are the cards we were dealt and I don’t know how I’m gonna manage. I have to work to pay bills and a daughter in college. She has been talking about sending him to a home, I will not. He’s my son and I will do what I have to do. I hope there are some government programs who can help. That’s all for now, my son needs me.

  6. I am a single father to an autistic boy. While his mom gets strung out on drugs reproduces yet again, she collects food stamps & the local DA & courts don’t really have much interest in helping me collect support. So I don’t totally know how it is for you but I feel you. It doesn’t help that California descends into economic chaos either.

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