Being a parent is tough. Let’s face it, your life has changed dramatically. But parenting a child with special needs brings additional challenges—ones you weren’t expecting, and others you find are absolutely devastating. Even more disconcerting, are when your friends and sometimes your family, clearly don’t comprehend the challenges you are now facing. It’s hard when you’re trying to be strong for your children every minute of the day. The fight is real, and after speaking with other parents who are also struggling, you’ll discover that there is common ground.
Feeling alone is normal. Suddenly, you’re uncomfortable to be around. Strangers look at you disapprovingly. And as things get difficult, many of your friends disappear because the situation is too tough for them to deal with.
While being ignored is unpleasant, being judged can be painful. Disabilities such as Autism, which is not always obvious to observers, can incite reactions ranging from curiosity to downright condemnation. This is only exaggerated by other people’s unwillingness to learn. As a parent, you must stand tall. You know others do not have all the correct information about each disability, and they do not know your child intimately enough to be able to understand. It’s okay. You know what’s right, and there are other parents who are experiencing these same issues. Seek them out. You need true friends who are willing to stick it out when times are tough.
It’s a fact: the cost of caring for a child with special needs is enormous. Many special needs families struggle to pay for the rotating door of medical expenses, therapy, and special equipment that is sometimes needed. None of it is cheap, and getting assistance can be difficult. Add to this the sea of insurance forms, medical reports, and test results that threaten to overtake every surface of the house, and it’s easy to see how you can become overwhelmed.
Caring for a child with special needs requires a mix of government benefits and personal income. The first plan of attack is to get help. Get your expenses under control. Find out if you are eligible for benefits. State and federal policies don’t make it easy to get financial assistance—part of the struggle families face is the detective work it takes to even discover the benefits that seem hidden within the system. But the money is there. You just need to apply for it.
Deep down you often wonder, could I do more? Could I try harder? Am I really doing all I can do? Sometimes, you have an overpowering feeling that you are failing at being a parent. You don’t have enough time or energy to do it all, and so the doubt creeps in about your performance as a parent, a spouse, a person.
You need to accept that you are human. You need down time, time to eat, sleep, exercise, relax and nurture your heart. There is a limit to how much one person can do. You give so much for your child, your love runs deep and wide and pushes you to move mountains. You are enough. You’re not a failure.
The way men and women grieve can be completely different, and this can lead to misunderstanding and arguments. You are each feeling emotions of sadness, anger, and frustration, and this can evolve into blaming each other.
The best thing you can do for your child is take good care of yourself and your marriage. If you can honestly communicate with your spouse during difficult times, your relationship has a chance to develop into something even stronger. Being proactive is important. It is easy to put everything on the back burner when you are so overcome with fighting for your child. But don't let this destroy your marriage. The comfort and joy of a solid relationship helps you conquer almost any obstacles that come your way.
You worry about the future constantly. What will happen to your child when you are not around? You don’t know what’s going to happen with your child when they become an adult, and you don’t want to even think about it until you have to. Statistics can be scary, but there are ways to combat them.
Creating a plan can ease anxiety. Some of the challenges you need to tackle are financial, such as how to set aside money for your child without affecting his or her government benefits. The bottom line is to get expert help so you can relax and feel confident that your child will be in good hands if something were to happen to you. And the sooner you get started on figuring it out, the sooner you'll have peace of mind down the road.
If you feel overwhelmed and you need help, please contact us.
American Advocacy group is on the front lines every day, making positive change happen for people diagnosed with Autism, Down syndrome and a range of diagnoses across the continuum. As a leading advocate for all people with intellectual and developmental disabilities and their families, and the premier provider of the support and services people want and need, we understand the system and know how to take action in regard to your best interests.
CONTACT US FOR HELP.
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