10 Mistakes I Have Made as a Special Needs Parent

Topics reviewed in this article:

  1. Being disorganized
  2. Having difficulty managing my to do list
  3. Trying to do everything myself & not asking for help
  4. Not having enough self care time
  5. Not applying for Social Security for my child
  6. Not applying for Medicaid if applicable
  7. Not preparing for the worse before community outings and travel
  8. Not doing my research before purchasing equipment
  9. Not adapting how I communicate with my child
  10. Not providing as much therapy as possible for my child

Parenting a child with special needs can be a challenging and sometimes frustrating experience. From wondering if your child is going to be okay to feeling unsure about your parenting skills to overwhelmed. You may feel uncertain about your parenting skills and worried about making the right decisions. But, this can also be a great opportunity to improve your parenting skills and enhance your life. Here are some of the biggest mistakes parents of special needs kids make, and how to avoid them.

1. Being Disorganized

As a parent, it is important that you stay organized. Taking care of a child with special needs can be challenging, but with the right organization, it will make things a lot easier for you.

Feeling overwhelmed

It’s especially difficult for parents who have a child with special needs because there is so much to keep track of and so much to manage. Parents must have a system in place that is able to help them organize their child’s care. They must be able to figure out what they need to do each day so they can give the best care to their child. By having an organized system, parents can help their child build their skills and functioning. It will also help parents feel a little more in control. 

2. Having Difficulty Managing My To Do List

Do you have a million things to do? And like, a million and one? As parents, we’re always think that we need to prioritize, balance, and organize everything so that we can stay on top of things. But when you have a special needs child, the constant pressure to manage everything can be overwhelming.

All of a sudden, your list of things to do, manage, and plan seems to double in length. Maybe triple? Or more? We’ve all been there. Fortunately, there are plenty of ways to manage your list and keep everything under control as a special needs parent.

3. Trying to do everything & not asking for help

When you have a child with special needs and other children to take care of in addition to other responsibilities such as making sure your house is cleaned, you might have too much to do. To make life easier and prevent the feeling of overwhelmed and stressed, you may have to ask for help.

Unfortunately, we cannot do it all. We have to delegate some of our responsibilities to others. Some of examples of how we can ask for help is:

  • Hire a cleaning service
  • Ask your spouse to help with your responsibilities.
  • Have your other children do chores
  • Ask your other family members if they would help with a responsibility.
  • Apply for nursing hours and find a nurse for your child.
  • Hire a sitter to free you up to have a break or complete other tasks.
  • Have your child go to school, therapy or day programs which would give you more free time.
  • Look into a respite program for your child

4. Not Having Enough Self Care Time

A frequent mistake I often make as a special needs parent is not taking the time for self care. We all need a break from our daily routine especially parenting our children.

What happens if you don’t have enough self-care?

If you do not take the time for you and take care of yourself, then you will be exhausted and will have difficulty tackling the day to day. Plus, you are more than likely to be stressed out.

The following are ideas for self-care:

  • Take a bath
  • Watch a movie or television show
  • Get a massage
  • Get your haircut
  • Exercise
  • Spend time with a friend or a spouse
  • Read a book

5. Not applying for Social Security for my child

The top biggest mistake I made shortly after my daughter was born was not applying for Social Security. When your child is a baby and has been diagnosed with a disability such as prematurity, blindness, deafness and Cerebral Palsy, they are automatically eligible for the Social Security program, no matter what your income is.

After your child is older, one of the major factors which the State/ Social Security evaluates your child’s eligibility is your income. If your income is higher than the eligibility range, then you are out of luck.

6. Not Applying for Medicaid if applicable

Similar to Social Security, Medicaid has its requirements for eligibility. Medicaid is included in a couple of programs such as Division of Specialized Care for Children.

Reasons applying for Medicaid is important.

It is essential to check to see if your child is eligible for Medicaid because Medicaid covers necessary equipment, feeding supplies and medical expenses when health insurance does not. Medicaid could significantly help you and your family financially.

7. Not preparing for the worse before community outings and travel

At times you are out and about with your special one, having extra clothes and supplies is important. Things happen. There may be a day, which your child will have a bathroom accident or they get sick and soil their clothes. If your child has a G tube, a feeding bag may not function right. Sometimes, you have so much going on, you forget a necessary item. Therefore, be prepared! Lastly, bring extra items as well, just in case. It is always better to be prepared for the worse then not all.

8. Not Doing My Research Before Purchasing Equipment

When my daughter was 3 years old and in the early intervention program, we were given 2 options to choose from: a heavy and bulky wheelchair or a heavy chair on a stroller base. We choose the stroller.

After using the stroller for months, I realized the stroller was not the best equipment for my daughter. Time and money was wasted on a stroller that was not a good fit. Because I was a new special needs parent, I had no idea that there were other options out there.

Here is a few other important facts I learned in regards to equipment:

  • If you are not satisfied with the company who provides the equipment, you can find a different one.
  • Most companies will give you a loaner of the equipment you are looking to purchase before you buy.
  • To ensure your child has an equipment that meets their needs and not waste money, you must do your research.

9. Not Adapting How I Communicate with My Child

Some children with special needs have difficulty communicating verbally due to having a disability and other difficulties. Therefore, we as parents need to have our child evaluated and afterwards implement the new way of communicating with our child in our daily routine.

Life as special needs parents are extremely busy. It is easy to forget to include alternative communication methods to use with your child. Utilizing an alternative communication style with your special needs child can be difficult at first to get used to implementing and always making it a habit.

10. Not Providing as much Therapy as possible for My Child

The older a child gets, the harder it is for them to learn new developmental skills. If your child is non-ambulatory and they are 3 years of age or older, the chances of your child improving their independent sitting, standing and walking skills decreases.

Therapy is crucial for your child’s development.

Therefore, it is crucial that your child participate in as much therapy as possible. Between the ages 0-3 years old, your son or daughter is eligible to be a part of the Early Intervention Program. Once your special one turns 3, he or she will be enrolled in the public school system.

Private therapies

In addition to therapy at your child’s school, you can find other beneficial therapies to help your child to make progress. Examples include:

  • Private therapies (Physical, Occupational and Speech therapy at home
  • Hippotherapy, see The Benefits of Hippotherapy
  • Aquatherapy
  • Intensive 5 week Therasuit therapy
  • Work with your child at home

See a similar post 12 Facts You May Not Know Being A Special Needs Parent

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