I will never forget the day my son was diagnosed with a life-threatening disease. It was an overwhelming sense of complete lack of control. I knew nothing about the disease, how to care for him, what it meant for his future, what it meant for our future, or how I could help him grow and thrive. On the same day, we were told he had a disease that could kill him, doctors also told us that he would likely have developmental delays and learning disabilities.
We accessed resources much later than we should have. My goal is to help other families.
When we left the hospital, I had no idea what to do next. No one gave me a list, a handout, or even an indication of what I could do as his parent to help him. Over the years, I have picked up information that has helped our family. Finding all the information on my own made life very arduous, and we accessed resources much later than we should have. My goal now is to help other families new to the special needs world not have the stress and frustration I had in the early days.
The steps you will need to take to help your child will not look like a parent of a developing child without a disability. These will be important for you and your child as they grow.
You will find your way.
1. Give Yourself Grace
The first thing you need to do is take a deep breath, and realize this life isn't going to be the way you hoped and dreamed. It is OK for you to feel sad, frustrated, or even angry at your child's diagnosis or position in life. Grief is normal for all parents of children with special needs. No parent wants to have a child have an illness, disease, or developmental disability that will make their life harder. As parents, we want our kids to grow, thrive and flourish. When your child is diagnosed, it may feel like a deep punch to the gut. You may feel all the wind knocked right out of you. All of this is normal, and it's OK to feel these feelings. Cry, scream, pound your fists on the table, or collapse to the ground. No parents want to find out that their child may have a life that will be different, harder, or possibly ends prematurely. When you receive the diagnosis, there will be so many questions, thoughts, and feelings that it will consume you. You may want to hide from others as you process the information. All of this is normal. Give yourself the grace to know that this will get better, you will find your way, and your best today may look different than your best tomorrow.
Search our local and online support.
2. Get Connected
The first thing I ever did after our diagnosis was to search out local and online support for families with children like my son. Facebook and other social media is a great way to find other families that are going through your same experience. There are private groups that cover nearly every diagnosis, and if there isn't, you can start your own. Families in this world are often left at home caring for a child that can't get out frequently. It becomes easy to become isolated and feel cut off from the world around you. However, you can't let yourself stay stuck in solitude. In order to process, learn and become a better parent, you need the experience of others to guide your way. Social Media gives you access to parents around the world, and you will be able to connect, learn and feel connected. Over the years, I have become members of many groups, made friends all over the world, and I find myself always able to find comfort no matter what is going on in our lives. Professionals are great at treating your child, but parents of children with special needs will be the best to help you heal your heart, teach you what you need to do, and be there for you on the roughest days.
Early intervention is critical.
3. Contact Your Local School District Early Intervention
If your child is diagnosed with any sort of disability, it is likely your child will not develop at the same pace as non-disabled peers. This means they meet milestones later than other children. Early intervention is critical in helping you learn the skills to help your child. In the United States, all school districts offer 0-3 programs that come to your home, evaluate your child, and then bring therapists into your home to help your child. This will be valuable for you and for your child. They will work with the two of you to help you learn skills necessary to help your child's development, and your child will have access to support and services that will enable their development. After your child ages out of 0-3 programs, most districts will offer special education preschool for free. This is a benefit that is tremendous and a gift for all families. Preschool for many families isn't possible because of the expense. Most districts offer it free to children that qualify for special education. Take the opportunity given to you, and let the professionals help your child.
Reach out and take the help that is offered.
4. Contact your County Department of Health and Human Services
When you find out your child has a disability, you need to make sure to contact your county's Department of Health and Human Services. Every state offers programs for children and adults with disabilities. The programs will vary from state to state. Some states offer Medicaid waiver programs, others offer county, and state grant programs, respite programs, and many states offer insurance via Medical Assistance for people with disabilities. I know it is hard for most families to ask for financial help, but a child with special needs will cost families more than four times. If your child has autism, it is estimated the cost to raise your child from 0 -18 is 1.4 million dollars. If your child has an intellectual disability, your costs could exceed 2.3 million dollars. If your child has a medical condition, those numbers can go even higher. My son is only five years old, and our expenses have already exceeded 1 million dollars. There is no possible way any family can manage that expense on their own, and there are programs to help you. Reach out and take the help that is offered, it will not only help you but help your child.
Start the SSI process if you qualify.
5. Contact The Social Security Administration
Children with disabilities that qualify as medically disabled can qualify for Social Security Income. SSI is a needs-based program that is available for children with families with low income and assets. SSI can be a valuable asset for families with lower income to help supplement the expenses of raising a child with special needs. To start the process, you will want to go to to the Social Security Administration Website and follow the instructions: https://www.ssa.gov/disabilityssi/apply-child.html
Your journey will be full of peaks and valleys. The one thing that will not change is the love you have for your child.
Now that you have the steps, it's up to you to get going to help your child. I know this isn't going to be easy. Take your time to grieve and understand your emotions. Once you have had the time to process the diagnosis, you can take active steps in helping your child. This journey you are embarking on will be full of peaks and valleys, but the one thing that won't change is the love you have for your child. With this information, we hope you can be prepared to help your child grow and thrive.
Katie Paulson is a Freelance Writer, Blogger and Advocate for Individuals with disabilities. Katie has been featured on The Mighty, Yahoo Parents, Huffington Post Denmark, Mamamia Australia, Firefly Friends, and her family was featured in a Cover story in Fohla Sao Paulo, Brazil. She works tirelessly in her community to improve access and inclusion for children with disabilities. She is founder of a local support network in her community. Her goal is to ensure all individuals with disabilities are given the respect, rights and access they deserve to live a life of inclusion. To read more from Katie visit her blog Without a Crystal Ball.