Caregiver Guide

9 Tips on Raising a Physically Disabled Child

If you are the parent or caregiver to a disabled child, you may feel overwhelmed with what to do to best help your child. Here are some basic tips to help you help your child.

1. BE ORGANIZED AND EDUCATED

If you were a General in the military, or if you were a coach of a sports team, one of your goals as you chased success would be to learn as much about your opponent as you possibly could. And as a parent of a child with physical disabilities, your goal should be the same! After all, the more you learn about your “opponent,” the better your position will be for conquering this opponent!

Try to find as much information as you can about your child’s disability, and make sure you are especially focusing your attention on the challenges your child may face – physically, in society, and psychologically. The more you are able to learn about these challenges before your child encounters them, the better position you will be in to help.

You will also want to make sure you know your child’s legal rights. Each disability is unique – and has unique protections – so educate yourself in these areas to the fullest extent possible, as this will help you protect your child as they make their way into the world.

And finally, you will want to keep closely-monitored lists of everything from your child’s medications to doctors to test results, as well as their schedule and treatments. This can make it a whole lot easier on your doctor or specialist, on you, and on your child.

2. FIND PROGRAMS FOR YOUR CHILD

One of the biggest obstacles many parents face when dealing with a child who has physical disabilities is the cost. The extra money that must be spent for one such child can be difficult, to say the least – and at times, can be downright crippling – and what’s more, these difficulties can persist throughout an individual’s life when they are the one dealing with a physical disability. Additionally, treatment options and processes can be difficult to understand and navigate for families that have a disabled child. The good news, however, is that there are a number of programs that can help you in each of these areas.

Social Insurance Programs:

Social Insurance programs are government-run entitlement programs; this means that people who have disabilities are able to access these programs regardless of their income or property. One example of a Social Insurance program is Social Security Disability Insurance (also known as SSDI).

Needs-based Programs:

Supplemental Security Income (SSI), Food Stamps, Medicaid, and rental subsidies are a few examples of needs-based programs available to qualifying persons with disabilities; these programs are, of course, based on need, with a look at income and savings.

Early Intervention Programs:

Generally speaking, a state’s Department of Health will have Early Intervention services provided for infants and children from birth to the age of five. Through these programs, medical and therapeutic treatment referrals are available for occupational, speech, and physical therapies. Your state’s Department of Health, as well as your child’s pediatrician, should be able to set you on the right path in this area.

Family Support Services:

There are a number of programs and services collected together beneath the umbrella of “Family Support Services.” One is respite care, which is away-from-home care for your disabled child for a set period of time. Of course, some parents opt to stay away from respite care, as they feel that giving in would be an admission that their child is “too much for them.” But the truth is, all parents can use a break at times – and this is especially true of parents of a disabled child. What’s more, these children can often use a break as well! With respite care, your child will be able to experience new things and interact with other children just like them – and when they return home, you will be rested and rejuvenated, and will be ready to take on your role of guardian and leader once again!

Family training is another available Family Support service; with family training, you will be able to have help in your actual home. This can help your child immensely, as they will be able to learn new things and be guided in the right direction in a familiar and comfortable setting.

If money is a concern for your family, cash subsidies is another place in which you can find help. The truth is, private insurance and Medicaid rarely cover all the items you will need for your child, but with cash subsidies, you can have the money for everything from specialized equipment to orthopedic shoes – items that are necessary for your child, and that you might not otherwise be able to purchase. There are, of course, plenty of restrictions when it comes to cash subsidies, but by checking with your state programs, you will be able to see if you qualify.

And finally, there are recreation services. These services give your child a place – outside of a school setting – where they will be able to learn and socialize with others. Day and overnight camps that specialize in children with disabilities, as well as recreation programs in your area that take place after school or on weekends – will be great places for your disabled child to grow, mature, and acclimate with others.

3. SEEK OUT OTHERS IN SITUATIONS THAT ARE SIMILAR TO YOURS

Peer interaction is an important developmental aspect for any child – but this is especially true for children with disabilities. What’s more, “peer” interactions can be immensely helpful for parents as well.

The first area in which you should be looking to plug into interaction opportunities is those that will benefit your child; children with disabilities have just as much of a need (and interest) in social activities as other children, and there are probably a lot of opportunities in your own community for your child’s particular needs. Sports and community involvement are great for helping your child develop both socially and academically – and by simply speaking to your physician or looking in your local newspaper, you should be able to find nonprofit groups that provide adapted activities for your child.

After you have plugged your child into social and community activities that will benefit them, start looking for parent support groups you can attend yourself. One of the basic truths of being a parent, after all, is that the more fully-developed and well-rounded you are – the more sound of mind and full of peace and confidence you are – the more you will find your children are growing into fully-developed, well-rounded, peaceful and confident adults. By attending support groups that focus on your unique needs as a parent of a disabled child, you will be able to learn and grow, and will be able to help your child learn and grow as well.

4. BE CONSCIOUS OF THE NEEDS OF YOUR DISABLED CHILD’S SIBLINGS

One of the core needs of children is attention. Most children, in fact, tend to directly equate “attention” with “affection” (and of course, “affection” is typically equated with “love”). And although you may not see things this way yourself, many children will feel as though their disabled sibling is receiving all the attention (that is, all the “affection,” and all the “love”) from their parents.

One of the important steps you can take in order to avoid this happening in your own family – that is, to avoid the rift this can cause to grow between you and your other children, as well as between your disabled child and your other children – is to talk plainly with your children about the perceived unfairness of the disabled child receiving more time and attention. In this way, you will reveal to your children that you recognize, understand, and respect their needs.

Furthermore, you will want to back up your purported affection for your other children with action. Make an effort to spend a little bit of quality “alone time” with each of your children, each day; this is important for all families, but it is especially important for families that have a disabled child! By giving just five minutes of direct attention to each of your children each day – spending a little time with them and giving them your complete and undivided awareness – you will ensure that each of your children feels special and loved.

It will also help for you to speak plainly with your other children about your disabled child. Allow them to ask questions, and be honest about your disabled child’s future – with a positive, but realistic note.

Also, make sure your children’s teachers know about the situation in your family; this will help these teachers handle your children in the most appropriate manner.

The more attention you pay to your other children’s needs, the more “taken care of” they will feel. Realize: it can require a concerted effort on your part to give your other children the full allotment of attention they need – but making this concerted effort can make a big difference!

5. MAKE SCHOOL A GREAT PLACE FOR YOUR CHILD

School is a difficult and complicated world for most children – but these difficulties and complications are often exacerbated for children with disabilities. While there will certainly be trials and challenges your disabled child will face no matter what you do, however, there are things you will be able to do in order to make their transition into school – as well as their long-term experience in school – smoother and more fulfilling.

The first thing you will need to do is be aware of your child’s specific needs. This goes for physical needs as well as for emotional and behavioral needs. By being aware of these needs your child has, you will be able to pass this information along to the school they will be attending, which will enable the school to give the best possible care to your child – specific to their needs.

Part of making sure your child’s school is equipped to take care of them will be enrolling your child in advance, and making sure the school knows of your child’s specific physical needs at that time. This will give the school enough time to make the necessary changes (such as changes to the stairs, to the bathrooms, or to classrooms) your child will require.

You will also want to speak with your child’s teacher in advance and let them know your child’s situation. In this way, they will be able to determine – with your help – the best approach to take with your child, given their needs.

And if behavior is an issue for your child at times, have your teacher send home a short note on your child’s behavior each day. This will help you to monitor and help with your child’s behavior – helping you to take care of the issues with their behavior a little bit at a time (rather than letting these issues build to an explosive level!).

And the second thing you will need to do is be aware of any learning disabilities or delayed skills your child may have as a result of their disability, as your child may be eligible for special services that provide an “individualized education program” (IEP) in public schools.

An IEP will allow your child to be taught in a special way, which will help them learn at their own pace – free of charge to you, as the parent.

If your child has learning disabilities, attention deficit hyperactivity disorder (ADHD), emotional disorders, cognitive challenges, autism, hearing impairment, visual impairment, speech or language impairment, or developmental delay, they may qualify for an individualized education program.

6. SET REALISTIC GOALS

One of the most effective ways to put yourself on the path to accomplishing things in life – in any area of life, that is – is to set goals. But in order for your goals to be accomplished, you will need to first make sure that these goals are realistic. By setting goals that are realistic – that are not impossible to achieve, but that will also take work to achieve – you will have something toward which you and your child can strive, and the movement you make toward these goals will give you strength and joy.

Gaining knowledge is going to be the primary key to making sure your goals are realistic. Take the time to understand your child’s disabilities – and realize that this means more than just “understanding the disability your child deals with.” Each situation is different, and each child is different, so get to know the disability itself, and get to know the manner in which it affects your child on a personal and individual level. This will put you in a position to set goals that you and your child will be able to achieve!

The right goals will ultimately maximize strengths while also considering weaknesses. And as you and your child strive to accomplish these goals, the future before each of you will continue to burn brighter!

7. TAKE CARE OF YOURSELF

One of the most difficult aspects of having a child with disabilities, quite frankly, can be taking care of yourself. Many parents get so wrapped up in taking care of their child, after all, that they neglect their own self – and in fact, when they think about “taking care of their own self,” they often imagine this to be a selfish thought. The truth, however, is that taking care of yourself will put you in the best position to take care of your child. After all, the more energized, relaxed, and “complete” you feel, the more equipped you will be to give your child the sort of positive attention and affection they require in order to grow into strong and complete individuals, in spite of their disabilities.

One of the best ways to make sure you are taking care of yourself is to carve out a bit of daily “me time” – time when you can relax, decompress, and take care of yourself. This may be time when you do yoga, time when you read a book, or simply time when you sit in your backyard with a glass of tea and enjoy the silence and peace of your surroundings.

Exercising, eating well, and getting enough rest will also be important aspects of taking care of yourself; in this way, you will ensure that you remain healthy and energetic. Find something you can do each day to exercise – whether it’s going for a walk or jog, visiting the gym, or simply spending five or 10 minutes doing calisthenics – and add this to the other things you can do to take care of your body, and you will find this makes a big difference.

Another thing you will discover can help is for you to try to plan a vacation – perhaps a little getaway for you and your spouse. Taking a few days away from the hustle and bustle of your daily life will do you some good, and will allow you to come back stronger than ever!

And one of the best things you can do to put yourself in a position to achieve success is to share some of the responsibilities required for taking care of your child. Let your spouse do their part; let the teachers at your child’s school do their part; let your child’s grandparents or aunts and uncles do their part; and have a close friend or family member who can be your “backup helper” – someone who can be on call, and can give you a short rest when you need one.

The more you do to take care of yourself, the more you will be able to do for taking care of your child!

8. FINDING THE RIGHT DOCTORS

Finding the right doctors for your children is extremely important for their health and for your peace of mind – and of course, when it comes to children with disabilities, this is the case to an even greater extent!

If you are on the lookout for a specialist who is not only at the top of their profession, but who also works well with parents and children, a great place to start is by asking other parents of children with disabilities. More often than not, you will find that these parents are able to recommend a good speech or physical therapist, a good doctor, a good dentist, or a good surgeon – according to your specific needs.

When you visit a medical professional, realize that it is perfectly acceptable to ask questions. If you do not understand something the professional has said to you, ask for clarification – and if you feel it will help, write down the answers and information they are giving you.

As is the case with many other areas of helping your child, it will also benefit you, in your search for the right medical professionals, to understand as much as you can about your child’s disability. This will put you in a position to ask specific questions, in search of specific answers to specific problems or issues.

Along these same lines, realize that it is okay to say “no” to a medical professional, or to express your disagreement with them on certain points. Realize that they are the professional in this area – but you are the professional with your child. Most doctors and specialists will be respectful of your assertions, and will take them into consideration; if you are dealing with a doctor or specialist who is unable to do so, there may be a better fit for you and your child.

As much as you may hate that this is the case, many people must also acknowledge that finances play a role in the decisions they will end up making – and this is not always the case with the suggestions a health professional will make. At times, you may find things in your own life that you can give up in order to make the finances work; in other instances, however, you will have to realize that a certain luxury or “above and beyond the norm” suggestion for your child may be something you need to put off – at least for now.

As you search for a health professional for your disabled child, be as open as you can with each professional you encounter – and once you select a professional you feel comfortable with, continue to be as open with them as you can be. In this way, you will be able to establish an open line of communication, and will be able to ensure that your child is receiving the best, most specialized and specifically-tailored treatment possible, from health professionals you trust and feel comfortable entrusting with your child!

9. EMBRACE AND CELEBRATE THE TRIUMPHS

There will be trials along the way as you raise a disabled child. This is natural for any children, after all – and is especially natural in these unique circumstances. But in addition to the trials, there will be triumphs – and when one such triumph occurs, regardless of how big or seemingly small it is – you will want to celebrate it.

The more you celebrate your child’s triumphs, the better this will make them feel about it. If they receive an “A” in a class, save that report card! If they win a medal or a blue ribbon in school, celebrate them for this achievement. If they make a sports team or achieve a certain milestone they have been trying to achieve, make an event out of this! As you do this – with the goal of helping your child – you will find that you are also helping yourself; after all, each small celebration is a chance to savor all the work you have put in, and all the ground you have covered.

When it comes down to it, a positive attitude will be your best defense against your child’s disability – and as a result, this positive attitude will rub off on your child, and will be their best defense as well.

Give your child everything they deserve – starting with a positive attitude and a positive outlook, and continuing into all the areas this leads you toward. It may seem like a struggle at first; it may seem like a challenge; it may seem unfair to you and your child, for this disability to have visited your family; the more steps you take in the right direction, however, the more triumphs you will experience – and in the end, these triumphs will build to a place where you and your child have a miraculous story. And this miraculous story can inspire others and cause them to grow.

You can be an inspiration to your child when you take the right steps. And what’s more, you and your child can also be an inspiration to the world arou

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