Raising or caring for a child with special needs is far from easy. However, along with the frustration and feelings of isolation comes the incredibly rewarding experience of watching your child grow, learn, and achieve new milestones—even if they are sometimes delayed.
It’s important to realize that you don’t have to get through the rough patches alone. There are support groups, other parents of special needs children, and disability services for children that you can access. Whether you turn to a doctor, a friend, a family member, a church group, or another community, there are so many resources available to help you tackle what sometimes can feel like an insurmountable task. To help, we’ve compiled a list of some of our favorite tips for caring for a child with disabilities.
1. Understand the Diagnosis
You need to have a crystal clear understanding of your child’s diagnosis. Read, research, ask questions, and take notes that you can refer back to later. Your child’s doctor is an excellent source. The internet has a wealth of information, too, but make sure that you are getting it from verified and trusted sources. Anything with a “.org” or “.gov” is a good place to start.
Ask yourself these questions as you research your child’s condition:
- What are the symptoms, side-effects, and complications associated with this diagnosis?
- How will this diagnosis impact my child’s development and ability to care for themselves?
- What treatments are available for this diagnosis?
- Are they research-backed and thoroughly tested?
- Are they covered by insurance/Medicaid?
- What modifications can I make to my home or my lifestyle that will benefit my child?
- Is there any medication, treatment, or equipment I can pursue to make my child more comfortable and enrich their life?
One way to check your understanding is to explain it to yourself as you would to a young child. If you can’t break down the diagnosis into its simplest terms, you may not have a complete grasp of it. Additionally, many children often have more than one diagnosis. Make sure you understand each one, including how they may impact or interact with one another.
2. Know Your Caregiving Team Lead
Other than yourself or your spouse, who is the lead on your child’s care? Is it your child’s pediatrician, therapist, or caseworker? If you are part of the Arkansas PASSE system, it may be your care coordinator. Whoever it is, you need to know and have an open line of communication with the person who will review all the tests, treatments, and medications, and help you put the puzzle pieces of the bigger picture together.
Obviously, as your child’s primary caregiver, you will also need to have a handle on these pieces. However, you cannot interpret the medical tests, psychological evaluations, etc., alone. You need a healthcare professional who can see and understand the care plan in its entirety.
Once you know who your champion is, don’t assume that they know what their role is. Talk to them about it and make sure that you’re on the same page. Make sure you have their buy-in—if they don’t want to be your team captain, you’ll need to find another provider.
3. Understand Your Child’s Special Needs
This is different from understanding your child’s diagnosis. Knowing why they act, look, or move the way they do is not the same as knowing how to help. Ask yourself, “What are the main issues my child is facing?”
Their special needs can manifest in several ways: difficulty with changes in routine, fear of physical contact, dislike of loud noises, need for extra time in school, inability to complete certain physical tasks, and more. Identifying their needs helps you—and everyone you and your child interact with—understand the unique challenges they face, regardless of their diagnosis.
Speech therapy, physical therapy, and occupational therapy for children with disabilities can all help you to meet your child’s individual needs. Remember—you are not alone. Knowledge is power, and the more you know about your child and their special needs, the easier it will be to meet those needs and help them thrive.
4. Identify Your Strengths
We all have our strengths and our weaknesses. To our kids, we may appear superhuman, but we are all too aware that we’re just people. But, that’s okay; it’s okay to not get everything right the first time. Grant yourself a little grace, and try to focus on how you can best help and support your child.
Maybe you have a knack for helping with speech therapy or coming up with creative motor skills activities. Maybe you’re able to understand complex medical information. Maybe you’re someone who never gives up, and it makes you an excellent advocate for your child. Maybe your gift is being able to calm a tantrum or see exactly what your child is trying to communicate. Whatever your strengths may be, be honest about them and throw yourself into those activities.
But, what about your weaknesses? Maybe you’re intimidated by doctors, you freeze when your child has a meltdown, or you’re easily frustrated by medical and legal jargon. Don’t worry—you’re only human. These are just areas where you could use a little extra help. This is when you reach out to those support systems we mentioned before.
Try to fill in your weak spots with strategies, services, and supplemental caregivers. For example, if you have trouble loading and unloading the car with your child’s wheelchair or other mobility devices, consider transportation services. If you know you have a hard time keeping up at the doctor’s office, record your appointments so you can listen back to the doctor’s comments about the diagnosis and treatment options. Take small steps to strengthen yourself in areas that can use improvement, and don’t be afraid to ask for outside help.
5. Don’t Try To Do It Alone
We’ve mentioned this in several other sections, but it’s so important we decided to give it its own number. You do not have to do this alone. We know it can be difficult to admit the depth of your child’s difficulty—and the difficulty you have dealing with it. But admitting these things can be the first step in getting support for them.
Be honest about your child’s challenges and needs so the people around you can see what you’re going through. They can’t help if they don’t understand the depth of the challenge you’re facing. If family and friends don’t fully understand (which can happen), join a support group in your area, or find one online. Other caregivers of kids with special needs understand exactly how you feel and know the challenges you face. Often they can offer advice and tips for making your and your child’s life easier.
There are also many disability services for children in Little Rock, including developmental day treatment clinic services, daycares specifically for children with special needs, and in-home care providers who can offer help and respite care.
Disability Services for Children in Little Rock
If you are looking for a special needs child daycare in Little Rock, Integrity Inc. can help. Contact us online or call 501-406-0442 today. We offer occupational therapy, child care, and other in-home care services for those with developmental or intellectual disabilities.